Australian Register of Clinical Registries

The Commission has developed the Australian Register of Clinical Registries (the Register) to facilitate collaboration and awareness of registry activity among key stakeholders.

The Register provides summary information on the purpose and organisation of clinical registries at all stages of development. The Register is voluntary and contains a list of clinical registries that have self-nominated to be published on the Register.

How to register a clinical registry

To list your clinical registry on the Register, complete the online submission form.

Following submission, the Commission will acknowledge receipt, review the content and confirm the information with the registry custodian prior to publishing the clinical registry on the Register.

How to update registry content

To update published registry content, please contact the Commission via email CQR@safetyandquality.gov.au and include your registry identification number (ACSQHC-ARCR-xxx) in the email subject line.

Clinical registries will be added to this list as the content of each registered clinical registry is curated and prepared for publishing. Registry custodians are requested to notify the Commission when registry details change. These changes will then be updated on the Register.

For clarification, the registration process does not include approval or endorsement by the Commission that the clinical registry is a clinical quality registry.

The search function allows you to conduct a basic search of the clinical registries for information such as clinical condition, registry name and participating sites. The ‘prioritised clinical domain’ field included in the list is in line with the Prioritised list of clinical domains for clinical quality registry development: Final report.

Once you find a relevant clinical registry, you will be able to contact the person listed as the ‘Registry contact’ for more information.

Registry ID	Condition	Prioritised clinical domain	Name	Abbreviation	Weblink	Registry contact	Year established	Description	Lead organisation	Ethics approval reference	Reporting process	Patient Reported Outcome Measures (PROMs)	Patient Reported Experience Measures (PREMs)	Participating sites
ACSQHC-ARCR-005	Blood transfusion	Nil	Australian and New Zealand Massive Transfusion Registry	ANZ-MTR	https://www.monash.edu/medicine/sphpm/registries/anz-mtr	Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu	2011	The Australian and New Zealand Massive Transfusion Registry (ANZ-MTR) Clinical Dataset brings together data from multiple sources and analyses and reports contemporary information on transfusion practice and patient outcomes following critical bleeding (CB) and massive transfusion (MT) (defined as ≤ 5 RBC units in any 4 hour period during hospital admission) in all clinical settings, including surgery, trauma, obstetrics and gastrointestinal bleeding. Data on more than 9,200 adult (≤ 18 years) patients from 29 participating sites have already been collected, analysed and the results shared with participants via site reports, presentations and publications. The ANZ-MTR’s unique and valuable dataset, available to inform policy development and practice improvement, is being transitioned from primarily a research tool to a sustainable operational model to align with Australia’s national safety and quality framework, whilst facilitating research. ANZ-MTR data are already linked with the Australian and New Zealand National Death Indexes and linkages with other registries (e.g. intensive care, cardiothoracic surgery, trauma, maternity outcomes) to provide expanded data for more sensitive outcome measurement is in progress. The ANZ-MTR uses electronic data extraction and data linkage methodologies. Clinical data from hospital data sources, including Laboratory Information Systems (for transfusion history and laboratory results) and Health Information Services databases (for patient demographics and admission data), are electronically extracted by the participating hospitals. The data are then sent securely to the ANZ-MTR, located at Monash University, where the separate information system data are linked to enable detailed analyses that otherwise would not be easily possible.	Monash University	NMA ethics HREC/18/Alfred/85	Hospital data and summary reports have been provided to the 56 participating sites across Australia and New Zealand. Presentations on current analyses are made at national and international meetings in addition to publications in the peer-reviewed literature. Reported in other public reports Shared with clinicians and hospital executive - benchmarking and site specific information is provided to contributing hospitals Shared with hospital executive Shared with medical colleges Reported to State/Territory health departments that provide funding	Nil	Nil	New South Wales Concord Hospital Liverpool Hospital Prince of Wales Hospital Royal Hospital for Women Royal Prince Alfred Hospital St George Hospital St Vincent’s Hospital Sydney Sutherland Hospital Westmead Hospital Queensland Gold Coast Hospital and Health Service Ipswich (West Moreton Hospital & Health Service) Mackay Hospital and Health Service Nambour General Hospital Prince Charles Hospital Princess Alexandra Hospital Royal Brisbane & Women’s Hospital Sunshine Coast University Hospital Townsville Hospital South Australia Flinders Medical Centre Royal Adelaide Hospital Women’s and Children’s Hospital Barossa Hills Fleurieu Local Health Network Eyre and Far North Local Health Network Flinders and Upper North local Health Network Limestone Coast Local Health Network Riverland Mallee Coorong Local Health Network Yorke and Northern Local Health Network Tasmania Launceston General Hospital Victoria Alfred Hospital Austin Health Barwon Health (University Hospital Geelong) Bendigo Health Service Cabrini Hospital Goulburn Valley Health Mercy Hospital for Women Northern Hospital Peter MacCallum Cancer Centre Royal Melbourne Hospital St John of God, Ballarat St John of God, Geelong St John of God, Bendigo St John of God, Warrnambool St John of God, Berwick Wimmera Base Hospital Western Australia Fiona Stanley Hospital Fremantle Hospital King Edward Memorial Hospital Royal Perth Hospital St John of God, Subiaco Sir Charles Gairdner Hospital New Zealand Auckland City Hospital Christchurch Hospital Middlemore Hospital North Shore Hospital Waikato Hospital Wellington Hospital
ACSQHC-ARCR-006	Rehabilitation	Nil	Australasian Rehabilitation Outcomes Centre	AROC	https://www.uow.edu.au/ahsri/aroc/	AROC Director, Australian Health Services Research Institute, University of Wollongong, aroc@uow.edu.au	2002	AROC is the rehabilitation integrated clinical outcomes and benchmarking centre for Australia and New Zealand. AROC operates in the inpatient and ambulatory settings and includes both adult and paediatric rehabilitation sectors. Coverage in the inpatient adult rehabilitation sector is almost 100%, with 289 services participating in data collection and benchmarking. A growing number of adult ambulatory rehabilitation services are also participating. All specialist paediatric rehabilitation services are participating in both the paediatric inpatient and ambulatory benchmarking initiatives. The primary purpose of AROC is to facilitate improvement in the quality of rehabilitation and thus patient outcomes achieved. Each member of AROC collects the appropriate defined AROC dataset for each and every episode of rehabilitation care provided. The datasets include demographic, clinical, process and outcome data items. AROC receives data describing almost 150,000 episodes of rehabilitation each year. The longitudinal database currently contains 1.5 million records and is thus a rich resource that forms a spine of rehabilitation data available to underpin research in the sector. Members of AROC receive a suite of benchmarking reports each six months, comparing the outcomes they achieve with the national data. AROC also holds regular quality forums/benchmarking workshops to present data at service level and facilitate the identification and uptake of best practice processes. As well as publishing an Annual Report describing the state of rehabilitation in each country, AROC provides a range of resources for members including decision support tools and best practice case studies.	Australian Health Services Research Institute	The University of Wollongong and Illawarra and Shoalhaven Local Health District Health and Medical (#HREC 2019/ETH13154)	Feedback to contributing clinicians Shared with clinicians Shared with hospital executive Shared with consumers Shared with medical colleges Reported to state/territory health departments Reported in annual report Reported in other public reports Quality improvement/benchmarking workshops: The purpose of these workshops is to examine the benchmarking data, share information and learn from services who are achieving the best outcomes. Service reports: each individual rehabilitation service receives a suite of reports that presents their data and also compares this to aggregated national data.	Planning is underway to introduce a new range of PROMs in future versions of the data collection. A pilot is currently underway.	The AM-CCRQ is an optional rehabilitation specific patient experience survey that is available for members.	Australian Capital Territory Calvary John James Hospital Canberra Private Hospital National Capital Private Hospital University of Canberra Hospital New South Wales Alwyn Rehabilitation Hospital Arcadia Pittwater Private Hospital Armidale Hospital Ballina District Hospital Balmain Hospital Bankstown-Lidcombe Hospital Baringa Private Hospital Bathurst Base Hospital Belmont Hospital Berkeley Vale Private Hospital Blue Mountains District ANZAC Memorial Hospital Bourke Street Health Service Goulburn Braeside Hospital Brisbane Waters Private Hospital Calvary Health Care Sydney Ltd Calvary Riverina Hospital Camden Hospital Campbelltown Private Hospital Coffs Harbour Health Campus Coledale Hospital Concord Repatriation General Hospital David Berry Hospital Delmar Private Hospital Dubbo Private Hospital Dudley Private Hospital Eastern Suburbs Private Hospital Figtree Private Hospital Forster Private Hospital Gosford Private Hospital Goulburn Base Hospital Sub-Acute Rehabilitation Greenwich Hospital Hirondelle Private Hospital HNEkidsRehab Holroyd Private Hospital Hornsby Ku-ring-gai Hospital Hunter Valley Private Hospital Hunters Hill Private Hospital John Hunter Hospital (Rankin Park) John Hunter Hospital (Royal Newcastle) Kareena Private Hospital Kempsey District Hospital Kurri Kurri Hospital Lady Davidson Private Hospital Lakeview Private Hospital Lawrence Hargrave Private Hospital Lingard Private Hospital Liverpool Hospital Lourdes Hospital & Community Health Service Maclean District Hospital Maitland Private Hospital Manly Waters Private Hospital Mater Sydney Mayo Private Hospital Mercy Care Centre Mercy Health Service Metropolitan Rehabilitation Hospital Minchinbury Community Hospital Mona Vale Hospital Moruya Hospital Mt Wilga Private Hospital Murwillumbah District Hospital Nepean Hospital Newcastle Private Hospital Nowra Private Hospital Orange Health Service Port Kembla Hospital Port Macquarie Private Hospital President Private Hospital Prince of Wales Hospital Royal Rehab Royal Rehab Private Hospital RSL LifeCare Therapy & Lifestyle Service Ryde Hospital Sacred Heart Shellharbour Private Hospital Shoalhaven District Memorial Hospital Southern Highlands Private Hospital Springwood St George Hospital (NSW) St John of God Hawkesbury District Health Service St Joseph's Hospital St Luke's Hospital St Vincent's Private Hospital Lismore St Vincent's Private Sydney Rehabilitation Sydney Adventist Hospital Sydney Children's Hospital Tamara Private Rehabilitation Tamworth Hospital The Children's Hospital at Westmead The Hills Private Hospital The Sutherland Hospital The Sydney Private Hospital Toronto Private Hospital Wagga Wagga Base Hospital War Memorial Hospital, Waverley Waratah Private Hospital Warners Bay Private Hospital Wauchope District Memorial Hospital Westmead Hospital Westmead Rehabilitation Hospital Wingham Community Hospital Wolper Jewish Hospital Woy Woy Hospital Wyong Hospital Northern Territory Alice Springs Hospital Darwin Private Hospital Katherine Hospital Palmerston Regional Hospital Queensland Brighton Subacute Services Brisbane Private Hospital Buderim Private Hospital Cairns Hospital Cairns Private Hospital Canossa Private Hospital Central West Rehabilitation Service Eden Private Hospital Gold Coast Private Hospital Gold Coast University Hospital Greenslopes Private Hospital Gympie Hospital Ipswich Hospital John Flynn - Gold Coast Private Hospital Logan Hospital Mackay Base Hospital Mackay Private Hospital Maleny Soldiers Memorial Hospital Maryborough Base Hospital Mater Health Services North QLD Ltd Rehabilitation Service Mater Hospital Mackay Mater Misericordiae Hospital Rockhampton Mater Private Hospital (Brisbane) Mater Private Hospital (Redland) Mater Private Hospital Springfield Nambour Selangor Private Hospital Noosa Private Hospital Peninsula Private Hospital Princess Alexandra Hospital Queensland Paediatric Rehabilitation Service (Queensland Children's Hospital) Redcliffe Hospital Robina Hospital Robina Private Hospital Rockhampton Base Hospital Roma Hospital Royal Brisbane & Women's Hospital (inc Rosemount) St Andrew's Ipswich Rehabilitation Services St Andrew's War Memorial Hospital St Stephen's Private Hospital St Vincent's Hospital - Toowoomba St Vincent's Private Hospital Brisbane Sunshine Coast University Hospital Sunnybank Private Hospital The Pain Centre of Excellence The Prince Charles Hospital The Southport Private Hospital The Townsville Hospital Toowoomba Hospital Wesley Hospital South Australia Calvary Adelaide Hospital Flinders Medical Centre Griffith Rehabilitation Hospital Memorial Private Hospital Modbury Hospital Mount Gambier and Districts Health Service Noarlunga Community Hospital Repatriation General Hospital Riverland Regional Health Service Royal Adelaide Hospital (Hampstead) The Queen Elizabeth Hospital Whyalla Hospital Women's and Children's Hospital Tasmania Launceston General Hospital Mersey Community Hospital North West Regional Hospital Royal Hobart Hospital Calvary - St John's Hospital Calvary - St Vincent's Hospital Victoria Albury Wodonga Health (Wodonga Campus) Angliss Hospital Bairnsdale Regional Health Service Barwon Health - McKellar Centre Campus Beleura Private Hospital Bendigo Health Care Group Broadmeadows Hospital Brunswick Private Hospital Cabrini Brighton Rehabilitation Cabrini Elsternwick Rehabilitation Cabrini Hopetoun Rehabilitation Cabrini Malvern Casey Hospital Caulfield Hospital Dandenong Hospital Donvale Rehabilitation Hospital Dorset Rehabilitation Centre Echuca Regional Health Epworth Camberwell Epworth Geelong Epworth Hawthorn Epworth Hospital (Richmond) Epworth Rehabilitation Brighton Frankston Rehabilitation Unit Goulburn Valley Health (Shepparton Campus) Holmesglen Private Hospital Kingston Centre La Trobe Regional Hospital Masada Private Hospital Melbourne Eastern Rehabilitation Murray Valley Private Hospital Northeast Health Wangaratta North Eastern Rehabilitation Centre Peter James Centre Rosebud Hospital Royal Melbourne Hospital - Royal Park Campus Shepparton Private Hospital South Eastern Private Hospital South West Health Care Warrnambool St George's Health Service St John of God Berwick Hospital St John of God Frankston Rehabilitation Hospital St John of God Geelong Hospital St John of God Health Care Bendigo St John of God Healthcare, Ballarat St John of God Hospital (Warrnambool) St Vincent's Hospital (Melbourne) Ltd St Vincent's Private Hospital Melbourne Ltd St Vincent's Private Hospital Werribee Sunshine Hospital Swan Hill District Health Victorian Paediatric Rehabilitation Services Victorian Rehabilitation Centre Wangaratta Private Hospital Werribee Mercy Hospital Western District Health Service, Hamilton Western Hospital Footscray Williamstown Hospital Wimmera Health Care Group Horsham Western Australia Albany Hospital Armadale Kelmscott Memorial Hospital Attadale Rehabilitation Hospital Busselton Health Campus Fiona Stanley Hospital Fremantle Hospital and Health Service Glengarry Hospital Hollywood Private Hospital Joondalup Health Campus Mount Hospital Northam Hospital Rehabilitation Service Osborne Park Hospital Peel Health Campus Perth Children's Hospital Rockingham General Hospital Royal Perth Bentley Group (Bentley Site) Sir Charles Gairdner Hospital South West Health Campus (Bunbury Hospital) St John of God Mount Lawley Hospital (Private) St John of God Mount Lawley Hospital (Public) St John of God Public & Private Hospital Midland New Zealand ABI Rehabilitation Management Ltd (Auckland) ABI Rehabilitation Services Wellington Ltd Active Plus Ashburton Hospital Auckland City Hospital Auckland Spinal Rehabilitation Unit Balclutha Hospital Burwood Hospital Cornerstone Rehab Ltd Dunedin Hospital OPH Dunstan Hospital Focus on Potential Gisborne Hospital Gore Hospital Greymouth Base Hospital (West Coast DHB) Habit Group Ltd (Auckland) Hawera Hospital Hawkes Bay Regional Hospital Healthvision Ltd Horowhenua Hospital Hutt Hospital Specialist Rehabilitation Service ISIS Centre (Wakari) Hospital Kenepuru Community Hospital - Capital Coast Rehabilitation Laura Fergusson Trust Laura Fergusson Trust Inc (Auckland) Masterton Hospital - Wairarapa DHB Middlemore Hospital Assessment, Treatment & Rehabilitation Unit Nelson Hospital ATR Service Neuro Rehab Results Ltd New Zealand Paediatric Rehabilitation Service North Shore Hospital (Waitemata) Oamaru Hospital Palmerston North Hospital, Rehabilitation (STAR 2) ProActive Rehab Ltd Pukekohe Hospital Rehab Partners Ltd Restart Rehab and Associates Ltd Rotorua Hospital (Lakes DHB Hospital Specialist Services) Southland Hospital Assessment, Treatment & Rehabilitation Service Step Ahead Therapy Services Ltd Taranaki Base Hospital Taupo Hospital (Lakes DHB Hospital Specialist Services) Tauranga Hospital TBI Health Group Ltd Thames Hospital Timaru Hospital Waikato Older Persons Rehabilitation Service (OPRS) Wairau Hospital Nelson Marlborough DHB Waitakere Hospital Whakatane Hospital Whanganui Hospital AT & R Service Whangarei Hospital
ACSQHC-ARCR-012	Chronic pain	Nil	electronic Persistent Pain Outcomes Collaboration	ePPOC	https://www.uow.edu.au/australasian-health-outcomes-consortium/eppoc/	Dr David Holloway, Australasian Health Outcomes Consortium, University of Wollongong, eppoc-uow@uow.edu.au	2013	ePPOC is an integrated outcome centre which aims to improve the quality of outcomes and services for people experiencing chronic pain. It is an initiative of the Faculty of Pain Medicine, and was established in 2013 with funding from the NSW Ministry of Health. There are 90 specialist adult and paediatric pain management services participating in ePPOC, across Australia and New Zealand. The purpose and aims of ePPOC are to: produce information on the effectiveness of pain management interventions through use of standardised assessment tools and measures; develop an Australasian benchmarking system to improve pain management outcomes; provide comparative data to pain management services using the benchmarks developed; develop clinical and management information reports that meet the needs of ePPOC stakeholders; provide annual reports that summarise the Australasian data; and develop research proposals to address areas of interest within the pain management sector. ePPOC receives data describing over 32,000 patients attending chronic pain clinics each year. The longitudinal database currently contains over 100,000 patients. For adult services, nine benchmarks and one indicator have been endorsed for pain management services to strive to achieve. These cover the following domains: pain and interference, depression, anxiety, stress, pain self-efficacy, pain catastrophising, opioid use and waiting time for treatment. For paediatric services, there is currently one benchmark and three indicators, covering waiting time for treatment, pain, quality of life and functional disability.	Australian Health Services Research Institute (AHSRI)	The University of Wollongong and Illawarra and Shoalhaven Local Health District Health and Medical HREC Reference 018/052	Reported in Annual Report Shared with clinicians Shared with hospital executive Reported in other public reports Benchmarking workshops: The purpose of these workshops is to examine the benchmarking data, share information and learn from services who are achieving the best outcomes Service reports: Each individual pain management service receives a report that presents their data and also compares this to aggregated data from all other participating services	Adults: Brief Pain Inventory; Depression, Anxiety Stress Scale; Pain Catastrophising Scale; Pain Self-Efficacy Questionnaire; Work Productivity and Activity Impairment Questionnaire; Global Rating of Change scale; CARRA Body Chart. Paediatrics: Modified Brief Pain Inventory; Faces Pain Scale - Revised; Paediatric Quality of Life Inventory; Bath Adolescent Pain Questionnaire – Pain-related worry section; Bath Adolescent Pain – Parent Impact Questionnaire; Work Productivity and Impairment; CARRA Body Chart.	Nil	https://www.uow.edu.au/ahsri/eppoc/about/ New South Wales Central Coast Integrated Pain Service, Gosford Hospital Coffs Harbour Chronic Pain Service Concord Repatriation General Hospital, Multidisciplinary Pain Clinic Hunter Integrated Pain Service, John Hunter Hospital Illawarra Shoalhaven Chronic Pain Service Innervate Pain Management John Hunter Children’s Hospital, Children’s Complex Pain Service Lismore Base Hospital, Pain Clinic Liverpool Hospital Chronic Pain Services Michael J Cousins Pain Management and Research Centre, Royal North Shore Hospital Nepean Blue Mountains Primary Health Network: - Nepean Blue Mountains PHN Community Chronic Pain Management Program Nepean Pain Unit Orange Chronic Pain Clinic Prince of Wales Hospital, Department of Pain Management Royal Prince Alfred Pain Management Clinic South Eastern NSW Primary Health Network: - COORDINARE Chronic Pain Management Program St George Hospital Pain Management Unit St Vincent's Hospital Sydney Pain Clinic Sydney Children's Hospital Randwick Interdisciplinary Complex Pain Service Sydney Spine and Pain Rehab Tamworth Integrated Pain Service (TIPS) The Children's Hospital at Westmead, Complex Pain Clinic Westmead Hospital Pain Management Centre Queensland Gold Coast Health, Interdisciplinary Persistent Pain Centre Metro South Health Persistent Pain Management Service, Princess Alexandra Hospital North Queensland Persistent Pain Management Service, Townsville Hospital Queensland Interdisciplinary Paediatric Persistent Pain Service St Vincent's Private Hospital Brisbane Sunshine Coast Persistent Pain Management Service Tess Cramond Pain and Research Centre Wesley Pain and Spine Centre South Australia Adelaide Primary Health Network: - Living Well with Persistent Pain Centre West Central Adelaide Local Health Network (CALHN) Queen Elizabeth Hospital Flinders Pain Management Unit Northern Adelaide Pain Rehabilitation Service, Northern Adelaide Local Health Network, Modbury Hospital Women's and Children's Paediatric Chronic Pain Service Tasmania Royal Hobart Hospital, Persistent Pain Service Victoria Advance Healthcare Austin Pain Service, Austin Health Ballarat Health Services Persistent Pain Management Services Barbara Walker Centre for Pain Management, St Vincent's Hospital, Melbourne Bendigo Health, Outpatient Rehabilitation Services, Pain Rehabilitation Clinic Caulfield Pain Management and Research Centre, Alfred Health Dorset Rehabilitation Centre Eastern Health Ambulatory Pain Management Service Empower Rehab Epworth Hospital, Epworth Healthcare Goulburn Valley Health Chronic Pain Clinic Latrobe Regional Hospital Melbourne Health Monash Children’s Hospital Pain Service Monash Health North Western Melbourne Primary Health Network: - Cohealth - Merri Health Northern Health Service Peninsula Health Integrated Pain Service, Persistent Pain Management Service Precision Ascend Royal Children's Hospital Children's Pain Management Clinic, Melbourne Royal Women's Hospital Victorian Rehabilitation Centre Western Health Pain Management Western Australia Fiona Stanley Hospital Pain Management Unit Sir Charles Gairdner Hospital WA Primary Health Alliance: - 360 Health + Community - Arche Health Chronic Pain Service - Black Swan Health Limited Midland - Black Swan Health Limited Wanneroo New Zealand Active+ Advantage South APM NZ Body in Motion Canterbury DHB, Burwood Hospital Pain Management Centre Capital and Coast DHB, Wellington Hospital Futureproof Rehab Habit Rehabilitation Hutt Valley District Health Board Integrative Pain Care Nelson Nursing Service Occupational Health Canterbury Pain Management & Rehabilitation Services Pain Rehabilitation Christchurch Proactive Rehab Proactive Southern Limited QE Health Limited Southern DHB Persistent Pain Service, Dunedin Hospital Southern Rehab Starship Complex Pain Service Taranaki DHB Persistent Pain Service TBI Health Group The Auckland Regional Pain Service DHB (TARPS), Auckland Regional Hospital Waikato DHB
ACSQHC-ARCR-015	Severe Asthma	Nil	Australian Benralizumab Registry	ABenRA	https://www.thoracic.org.au/researchawards/australasian-severe-asthma-registry-asar	Peter Gibson, Hunter Medical Research Institute, peter.gibson@newcastle.edu.au,asar@thoracic.org.au	2019	The Australian Benralizumab Registry (the ABenRA) collects and reports on data from people with severe refractory eosinophilic asthma who receive benralizumab: As part of the PBS subsidised benralizumab treatment cycle, and the Pharmaceutical Benefits Scheme (PBS) Section 100 Special Authority Program, or For severe refractory eosinophilic asthma outside of the PBS restrictions. The ABenRA provides a mechanism for sharing information which will help researchers and clinicians to better understand the use, efficacy, and safety associated with the treatment of severe asthma with benralizumab. The aim of the registry is to assess the change in patient reported asthma related symptoms after enrolment in the benralizumab registry following initiation of benralizumab in a real-world setting in the full study population and pre-specified subgroups.	The Thoracic Society of Australia and New Zealand (TSANZ)	Ethics approval received from Hunter New England HREC:2019/ETH08669	Reported in Annual Report Reported in other public reports Shared with clinicians Shared with medical colleges	Asthma Control Questionnaire (ACQ) Asthma Quality of Life Questionnaire (AQLQ)	Nil	https://www.thoracic.org.au/researchawards/asar-sites New South Wales Concord Repatriation General Hospital John Hunter Hospital St George Specialist Centre St Vincent’s Clinic Westmead Hospital Woolcock Institute of Medical Research Western Australia Fiona Stanley Hospital Victoria Frankston Hospital Queensland Princess Alexandra Hospital South Australia Royal Adelaide Hospital
ACSQHC-ARCR-017	Severe Asthma	Nil	Australasian Severe Asthma Registry	ASAR	https://www.thoracic.org.au/researchawards/australasian-severe-asthma-registry-asar	Peter Gibson, University of Newcastle, peter.gibson@newcastle.edu.au, asar@thoracic.org.au	2019	The Australasian Severe Asthma Network (ASAN) is a multicentre clinical research network that: Collects and reports on data from people with severe asthma Facilitates clinical research in this population, and Seeks to improve clinical practice for this condition. The ASAN provides a mechanism for sharing information which helps researchers and clinicians to better understand severe asthma and develop optimised clinical management strategies. The ASAN collects data relating to patients who are diagnosed with Severe Refractory Asthma (SA) and who are recruited from participating sites across Australia, Singapore, and New Zealand. All information collected from affiliate sites are securely stored in the main data repository. Access to the database is restricted to authorised users.	The Thoracic Society of Australia and New Zealand (TSANZ)	Hunter New England HREC Reference No: 12/11/21/4.04; NSW REGIS Reference No: 2019/ETH03836	Reported in Annual Report Reported in other public reports Shared with clinicians Shared with consumers Shared with medical colleges	Asthma Control Questionnaire (ACQ) Asthma Quality Of Life Questionnaire (AQLQ)	Nil	https://www.thoracic.org.au/researchawards/asar-sites Victoria The Alfred Hospital Frankston Hospital New South Wales Campbelltown Hospital Concord Repatriation General Hospital John Hunter Hospital Liverpool Hospital St George Specialist Centre St Vincent’s Clinic Westmead Hospital Woolcock Medical Research Institute Western Australia Fiona Stanley Hospital Queensland Princess Alexandra Hospital South Australia Royal Adelaide Hospital
ACSQHC-ARCR-034	Thrombotic Microangiopathies including TTP and HUS	Nil	Thrombotic Microangiopathies (TMA) Registry	TMA Registry	https://www.monash.edu/medicine/sphpm/registries/ttp	Dr Shiyang (Shayna) Jia, Transfusion Research Unit, Monash University, tmaregistry@monash.edu	2008	Thrombotic Microangiopathies (TMAs) are characterised by platelet aggregation within small blood vessels. This consumes platelets (causing thrombocytopenia), and the damaged/narrowed vessels cause mechanical destruction of red blood cells (microangiopathic haemolytic anaemia). The consequent disruption to blood flow within small vessels leads to end organ damage/dysfunction (e.g. kidney failure or stroke). Thrombotic microangiopathies can occur as a result of a variety of inherited and acquired conditions, and are now seen (and recognised) more commonly, particularly as they can occur as a result of new medications, such as some of the newer anti-cancer agents. Thrombotic thrombocytopenic purpura (TTP) is long recognised as a TMA affecting primarily the central nervous system and kidneys. TTP is a rare, life threatening disorder that had an almost universally fatal outcome till the introduction of plasmapheresis in the late 1980s and early 1990s. Haemolytic Uraemic Syndrome (HUS) is another rare TMA often preceded by a diarrhoeal illness caused by Shiga toxin-producing organisms (especially Escherichia coli (STEC) or Shigella bacteria). Atypical HUS (aHUS) has been used to encompass a group of TMAs that are neither TTP or HUS, and which are most commonly associated with acquired or inherited defects in the complement pathway or complement regulatory proteins. The relative rarity of the individual types of TMA is a barrier to accrual of data and material to support scientific studies and randomised clinical trials. A national registry for all Australian patients with TMA provides an important community resource. The aims of the TMA Registry are to: Determine the incidence, natural history, specific clinical characteristics, and clinical outcome of patients with TMAs, particularly TTP, HUS and aHUS Provide information on the range of therapies employed in the treatment of TMA patients Explore factors influencing clinical outcomes Help define optimal management of patients with TTP and HUS Inform and inspire future hypothesis-driven research in this area The TMA Registry is a register of patients who develop TTP or HUS in any clinical setting. Clinical data collection is undertaken by clinicians in specialist units at participating hospitals. Data management and analysis is undertaken by the Department of Epidemiology and Preventive Medicine (DEPM), Monash University and interpreted with the input of specialist clinicians on the steering committee.	Monash University	Royal Brisbane and Women's Hospital HREC: HREC/10/QRBW/435	On-line Hospital Data Report Annual Report Newsletter with stakeholders Scientific Publication	Nil	Nil	Australian Capital Territory Canberra Hospital New South Wales Calvary Mater Children’s Hospital Westmead Concord Hospital Liverpool Hospital Nepean Hospital Orange Hospital Prince of Wales Hospital Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital Sydney Children’s Hospital Westmead Hospital Wollongong Hospital Northern Territory Royal Darwin Hospital Queensland Gold Coast Hospital Children’s Hospital Queensland Mater Hospital Brisbane Princess Alexandra Hospital Royal Brisbane & Women’s Hospital Townsville Hospital South Australia Flinders Medical Centre Queen Elizabeth Hospital Royal Adelaide Hospital Tasmania Launceston General Royal Hobart Hospital Victoria Alfred Hospital Austin Hospital Barwon Health Box Hill Hospital Monash Children’s Hospital Monash Medical Centre Royal Children’s Hospital Melbourne Royal Melbourne Hospital St Vincent’s Hospital Melbourne Western Hospital Western Australia Fiona Stanley Hospital Royal Perth Hospital Sir Charles Gardiner Hospital New Zealand Starship Children’s Hospital Other Red Cross Blood Service
ACSQHC-ARCR-037	Upper Gastrointestinal Cancer Registry – Oesophagogastric Module	Nil	UGICR – Oesophagogastric Module	Oesophagogastric Cancer	https://ugicr.org.au/	Elysia Greenhill, Monash University, ugicr@monash.edu	2015	The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The oesophagogastric module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the oesophagus and stomach, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.	Monash University	National Mutual Acceptance, Monash Health HREC: Reference 15482A Aboriginal Health and Medical Research Council of New South Wales HREC: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611	Reported in Annual Report Shared with clinicians Shared with hospital executive	PROMs is a future endeavour of this module.	PREMs is a future endeavour of this module.	Victoria Albury Wodonga Health Alfred Health Austin Health Ballarat Health Services Bendigo Health Cabrini Health Eastern Health Epworth Health Care Frankston Private Goulburn Valley Health Jessie McPherson Private Hospital Latrobe Regional Hospital Monash Health, Northern Health Peninsula Health Peter MacCallum Cancer Centre Ramsay – Warringal Private Hospital Royal Melbourne Hospital St Vincent’s Hospital Melbourne St Vincent’s Private Hospital Melbourne Warringal Private Hospital Western Health
ACSQHC-ARCR-044	Bone and soft tissue tumours	Nil	Australian Comprehensive Cancer Outcomes and Research Database (ACCORD) Sarcoma Database	ACCORD Sarcoma Database	https://www.biogrid.org.au/accord-collection-software	Susie Bae, Peter MacCallum Cancer Centre, susie.bae@petermac.org	2009	The Australia and New Zealand Sarcoma Association (ANZSA) supports sarcoma data collection at six major sarcoma referral centres around Australia through the ACCORD sarcoma database. Data collection was initiated as a pilot in 2009, firstly at Peter MaCallum Cancer Centre, and subsequently expanded to include additional sites. Each hospital has HREC approval in place for ongoing data collection for research purposes and only custodians of ethically approved studies can access de-identified data. Single-site and multi-site audits and patterns of care studies have been conducted and ANZSA produces six-monthly data reports and encourages the engagement of sarcoma researchers in utilising the sarcoma registry.	The Australia and New Zealand Sarcoma Association	HREC 06/08 Petermac	Feedback to contributing clinicians via biannual ANZSA reporting to ANZSA members Shared with clinicians Shared with medical colleges	Nil	Nil	Peter MacCallum Cancer Centre Chris O'Brien Life House Prince of Wales Hospital Sir Charles Gardiner Hospital Royal Adelaide Hospital The Canberra Hospital
ACSQHC-ARCR-048	Heart and Lung transplantation	Adult critical care	Australian and New Zealand Cardiothoracic Organ Transplant Registry - CLOSED	ANZCOTR	Nil - closed	Nil - closed	1990	The registry contains an agreed set of data variables from every heart and lung operation performed in the six facilities in Australia and New Zealand since 1984, and is ongoing. The aim is to track defined variables to determine their effect on survival outcomes for patients and to provide statistical information on the numbers and types of these procedures being performed over time.	Australian and New Zealand Cardiothoracic Organ Transplant Registry	St Vincent's Sydney HREC: H03/009	Feedback to clinicians Feedback to states and territories (via annual report or specific statistical only data requests) Reported in Annual Report Reported in other public reports Shared with clinicians Shared with consumers Reports to Organ and Tissue Authority	Nil	Nil	Participating sites before closure of registry Victoria The Alfred, Melbourne Royal Children's, Melbourne Western Australia Fiona Stanley, Perth Queensland Prince Charles, Brisbane New South Wales St Vincents, Sydney New Zealand Auckland City Hospital, New Zealand
ACSQHC-ARCR-061	Neural tube defects and sacral agenesis	Nil	Victorian Neural Tube Defects Register	VNTDR	https://www.mcri.edu.au/neurodisabilityandrehabilitation	Catherine Marraffa, Royal Children's Hospital, Murdoch Children's Research Institute, catherine.marraffa@rch.org.au	2015	This registry was set up in 2015. The aim was to establish a longitudinal clinical registry with initial retrospective ascertainment of cases for the preceding 22 years (1993 to 2015) and ongoing prospective ascertainment of all children with a Neural Tube Defect (NTD) or Sacral Agenesis (SA) who attend the Spina Bifida/Neural Tube Defect clinic at The Royal Children’s Hospital, Melbourne. It is hoped the other site in Victoria caring for children with this condition, (Monash Children's Hospital) will join the registry and then the rest of Australia in order to determine current practices ,therapies with the hope that longitudinal outcomes may inform future practice.	Murdoch Children's Research Institute	Royal Childrens Hospital HREC Reference: 35122A	Feedback to contributing clinicians Shared with consumers	Nil	Nil	Victoria The Royal Children’s Hospital Melbourne
ACSQHC-ARCR-067	Anaesthetics	Nil	Queensland Perioperative and Periprocedural Anaesthetic Mortality Review Committee	QPPAMRC	https://clinicalexcellence.qld.gov.au/priority-areas/safety-and-quality/queensland-perioperative-and-periprocedural-anaesthetic-mortality	Karen Hamilton, Healthcare Improvement Unit, Clinical Excellence Queensland, QPPAMRC@health.qld.gov.au	2012	The Queensland Perioperative and Periprocedural Anaesthetic Mortality Review Committee (QPPAMRC) is a gazetted Quality Assurance Committee pursuant to Part 6, Division 1 of the Hospital and Health Boards Act 2011. The Committee reports and provides advice to the Director-General, Queensland Department of Health via an annual report and on a needs basis. The QPPAMRC was established to: Collect and analyse clinical information regarding perioperative and periprocedural anaesthetic mortality in Queensland to identify statewide trends Makes recommendations to the Queensland Minister for Health on standards and quality indicators of perioperative and periprocedural anaesthetic clinical care to enable health care providers to review and improve safety and quality of care in Queensland health services Assists with the adoption of such standards in both public and private sectors. The Committee functions collaboratively with the Statewide Anaesthesia and Perioperative Care Clinical Network (SWAPNET), other relevant clinical networks and the Private Hospitals Association of Queensland.	Healthcare Improvement Unit, Clinical Excellence Queensland	Quality improvement initiative The QPPAMRC functions under the authority of the Hospital and Health Boards Act 2011, Part 6, Safety and quality, Division 1 Quality assurance committees, the purpose of which as defined in Section 81, is to improve the safety and quality of health services by providing protections for quality assurance committees established under the division.	Annual report provided to the Director-General, Queensland Health (QAC requirement) Mortality Review Report developed for every 1000 cases as an opportunity for learning for anaesthetists across Queensland Mortality Review Report provided to the Statewide Anaesthesia and Perioperative Care Clinical Network (SWAPNET) for consideration / action as required Shared with clinicians Shared with medical colleges	Nil	Nil	Queensland Atherton Hospital Ayr Hospital Beaudesert Hospital Biloela Hospital Bundaberg Hospital Caboolture Hospital Cairns base Hospital Caloundra Hospital Charleville Hospital Chinchilla Hospital Cooktown Hospital Dalby Hospital Health Service Emerald Hospital Gladstone Hospital Gold Coast Hospital Goondiwindi Hospital Gympie Hospital Hervey Bay Hospital Ingham Hospital Innisfail Hospital Ipswich Hospital Kingaroy Hospital & Community Health Centre Logan Hospital Longreach Hospital Mackay base Hospital Mareeba Hospital Maryborough Hospital Mount Isa Base Hospital Nambour General Hospital Princess Alexandra Hospital Proserpine Hospital Queen Elizabeth II Jubilee Hospital Redcliffe Hospital Redland Hospital Rockhampton Base Hospital Roma Hospital Royal Brisbane & Womens Hospital St George Hospital Stanthorpe Hospital The Prince Charles Hospital The Townsville Hospital Theodore Hospital Thursday Island Hospital Toowoomba Hospital Warwick Hospital
ACSQHC-ARCR-070	Trauma	Trauma	Australia New Zealand Trauma Registry	ATR	www.atr.org.au	Ancelin McKimmie, Monash University, ancelin.mckimmie@monash.edu	2011	The Australia New Zealand Trauma Registry (ATR) collects 90 data-points in accordance with the Bi-national Trauma Minimum Dataset for Australia and New Zealand, for severely injured patients (ISS>12) or death after injury, from 28 Australian and seven New Zealand major trauma centres. The ATR provides risk adjusted outcomes to trauma centres and continues to increase its capture of major trauma through rigorous recruitment. The ATR focuses on monitoring trauma care, from time of incident to discharge from definitive care, in order to reflect and act upon emerging trends and demands on the trauma system across Australia and New Zealand. Collecting and analysing information about trauma patients, their management and their injury outcomes informs future improvements to health service provision and development, with the long term societal aim of reducing preventable deaths and permanent disability as a result of injuries.	Alfred Health through the National Trauma Research Institute. Monash University is contracted to manage the ATR database, including data storage, safety, security, and the provision of analytical support services.	Alfred Health HREC: Project 241/12	Reported in Annual Report Shared with clinicians Shared with hospital executive	Nil	Nil	https://atr.org.au/partners Australian Capital Territory Canberra Hospital New South Wales John Hunter Children’s Hospital John Hunter Hospital Liverpool Hospital Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital St Vincent’s Hospital Sydney Children’s Hospital The Children’s Hospital at Westmead Westmead Hospital Northern Territory Royal Darwin Hospital Queensland Gold Coast University Hospital Princess Alexandra Hospital Queensland Children’s Hospital Royal Brisbane and Women’s Hospital Sunshine Coast University Hospital Townsville Hospital South Australia Flinders’ Medical Centre Royal Adelaide Hospital Women’s and Children’s Hospital Lyell McEwin Hospital Tasmania Royal Hobart Hospital Victoria Alfred Hospital Royal Children’s Hospital Royal Melbourne Hospital Western Australia Perth Children’s Hospital Royal Perth Hospital New Zealand Auckland City Hospital Christchurch Hospital Dunedin Hospital Middlemore Hospital Starship Hospital Waikato Hospital Wellington Regional Hospital
ACSQHC-ARCR-080	Immune-mediated Inflammatory Myopathies	Nil	The Australasian Myositis Registry	The Myositis Registry	https://www.perroninstitute.org/clinics/clinic/inflammatory-myopathies-clinic/	Kelly Beer, Institute for Immunology and Infectious Diseases, Murdoch University, and the Perron Institute, k.beer@iiid.murdoch.edu.au	2019	The Australasian Myositis Registry (‘Myositis Registry’) is a multi-centre, international, longitudinal, observational program for patients with myositis that has been designed to track the natural history and progression of the disease and patient outcomes. The benefits of the Myositis Registry are twofold: for clinicians and researchers, the Myositis Registry will provide an important tool for novel insights into disease mechanisms, diagnostic tools and identify potential treatments and targets for therapies; and for patients the Myositis Registry will offer an opportunity to take an active role in their clinical care via a ‘Patient Portal’, which allows the patient to access their data and monitor their condition. The Myositis Registry also provides a research feasibility and recruitment facility, as the database population can be analysed to identify potential research candidates and determine study feasibility within disease sub-groups, including for studies with extensive phenotype inclusion criteria. Potential research participants can be notified of research opportunities without their confidentiality being compromised, allowing the patient to make informed choices regarding research participation.	Myositis Discovery Programme, a project supported by the Perron Institute, Murdoch University, University of Notre Dame Australia, and Fiona Stanley Hospital	2019-007 Murdoch University Human Research Ethics Committee	Feedback to contributing clinicians – summary reports Shared with other clinicians – anonymised data sets available on request Shared with hospital executive Shared with consumers – consumers can log into a ‘patient portal’ and information also fed back via consumer advocacy groups Shared with medical colleges Reported to state/territory health departments – as requested Reported in Annual Report – within annual reports from the sponsoring institutions Reported in other public reports	Manual Muscle Testing (MMT) IBM Functional Rating Scale (IBM-FRS) Short Form 36 (SF-36) Health Assessment Questionnaire (HAQ) Patient Global Activity (PaGA) Physician Global Activity (PhGA) Myositis Disease Activity Assessment Tool (MDAAT)	Nil	Institute of Immunology and Infectious Diseases (IIID) Murdoch University and The Perron Institute for Translational and Neurological Sciences (both WA) – Lead Site.
ACSQHC-ARCR-092	Burns injuries	Major burns	Burns Registry of Australia and New Zealand	BRANZ	https://www.monash.edu/medicine/sphpm/branz	Lincoln Tracy, Monash University, anzba.registry@monash.edu	2009	The Burns Registry of Australia and New Zealand is a clinical quality registry capturing epidemiological, quality of care, and outcome data for adult and paediatric burn patients across Australian and New Zealand burn units. The purpose of the registry is to monitor burn injury incidence and causation, identify objective and verifiable evidence-based information on treatment, outcomes, and quality of care to encourage higher standards of both burn injury prevention and patient care.	Monash University	CF08/2431 - 2008001248, Monash University HREC	Reported in Annual Report Shared with clinicians Feedback to contributing clinicians	Nil	Nil	https://www.monash.edu/medicine/sphpm/branz/about Queensland Royal Brisbane & Women's Hospital Lady Cilento Children's Hospital New South Wales Children's Hospital at Westmead Concord Repatriation General Hospital Royal North Shore Hospital Victoria The Alfred Royal Children's Hospital Tasmania Royal Hobart Hospital South Australia Royal Adelaide Hosptial Women's & Children's Hospital Western Australia Fiona Stanley Hospital Perth Children's Hospital Northern Territory Royal Darwin Hospital New Zealand Christchurch Hospital Hutt Hospital Waikato Hospital Middlemore Hospital
ACSQHC-ARCR-095	Frailty	Dementia	Western Sydney Clinical Frailty Registry	WSCRF	Nil	Associate Professor Caleb Ferguson, Western Sydney University & Western Sydney Local Health District, ferguson@westernsydney.edu.au caleb.ferguson@health.nsw.gov.au	2020	The Western Sydney Clinical Frailty Registry is designed: To obtain a representative cross-sectional view of patients with frailty and their management in Blacktown Hospital Geriatric Medicine Service. To establish a clinical profile of patients admitted to Blacktown Hospital Geriatric Medicine Service over a five year period (2020-2025). Describe the rate and outcomes of frailty among patients admitted to the Blacktown Hospital Geriatric Medicine Service. Secondary objectives: To obtain a representative cross-sectional study cohort with their socio-economic, medical history, pharmacotherapy, cognitive and frailty assessment data.	Western Sydney Local Health District	Western Sydney Local Health District HREC 2019/ETH12635	Reported in other public reports Shared with consumers Shared with hospital executive Shared with other clinicians Dissemination at scientific conferences, peer reviewed publications, local fora, news stories, blogs and social media	Frailty and Performance measures (FI-ED, Rockwood Clinical Frailty Scale and the AKPS)	Frailty and Performance measures (FI-ED, Rockwood Clinical Frailty Scale and the AKPS)	New South Wales Blacktown Hospital Mount Druitt Hospital
ACSQHC-ARCR-103	Prostate Cancer	High burden cancers	Prostate Cancer Outcomes Registry - Australia and New Zealand	PCOR-ANZ	https://prostatecancerregistry.org/	Krupa Krishnaprasad and Nik Zeps, Monash University, pcor-anz@monash.edu	2012	PCOR-ANZ (Prostate Cancer Outcomes Registry - Australia and New Zealand) is a large-scale prostate cancer registry that collects information on the care provided and the outcomes for men diagnosed with prostate cancer in Australia and New Zealand. Clinical and patient-reported data are collected within Australian jurisdictions and in New Zealand. Our purpose is to monitor; benchmark and report on prostate cancer treatment and care; provide risk adjusted, evidence based data to clinicians, hospitals and decision makers on prostate cancer management. Additionally, the registry aims to foster improved quality of treatment and care for men diagnosed with prostate cancer and research leading to improvement in care and survival and enabling comparisons across countries.	Monash University	Monash University Human Research Ethics Committee Reference: 21692	Reported in an annual report Shared with clinicians Shared with hospital executive	Expanded Prostate cancer Index Composite Short Form (EPIC-26) - Quality of Life, EORTC QLQ –PR25 and questions from the utilisation of sexual medications/devices (Libido questions only) questionnaire	Nil	https://prostatecancerregistry.org/whos-involved/ Hospitals are listed below. Please click on the link above for a list of clinicians involved. Australian Capital Territory Barton Private Hospital Calvary Bruce Private Hospital Calvary Public Hospital Bruce Canberra Private Hospital Icon Cancer Centre Canberra National Capital Private Hospital Calvary John James Hospital Canberra Hospital Victoria Alfred Hospital (Alfred Health) Alfred Radiation Oncology (Alfred Health) Angliss Hospital (Eastern Health) Austin Hospital (Austin Health) Bairnsdale Regional Health Service Ballarat Health Service Bass Coast Health Beleura Private Hospital (Ramsay Health Care) Bendigo Health Box Hill Hospital (Eastern Health) Broadmeadows Hospital (Northern Health) Cabrini Hospital Brighton Cabrini Hospital Malvern Casey Hospital (Monash Health) Caulfield Hospital (Alfred Health) Central Gippsland Health Service Colac Area Health Craigieburn Centre (Northern Health) Dandenong Hospital (Monash Health) Echuca Regional Health Epworth Eastern Epworth Freemasons Epworth Geelong Epworth Hawthorn Epworth Richmond Footscray Hospital (Western Health) Frankston Hospital (Peninsula Health) GenesisCare Albury Wodonga GenesisCare Berwick GenesisCare Cabrini GenesisCare Epping GenesisCare Footscray GenesisCare Frankston GenesisCare Ringwood GenesisCare St Vincent's Gippsland Radiation Oncology Gippsland Southern Health Service Goulburn Valley Health Healesville Hospital (Eastern Health) Heidelberg Repatriation Hospital (Austin Health) Kerang and District Health Kyabram District Health Services Kyneton District Health Service Latrobe Regional Hospital Linarce Private Hospital (Ramsay Health Care) Maroondah Hospital (Eastern Health) Maryvale Private Hospital Masada Private Hospital Mildura Base Hospital Mildura Private Hospital Mitcham Private Hospital (Ramsay Health Care) Monash Medical Centre Clayton (Monash Health) Moorabbin Hospital (Monash Health) Mulgrave Private Hospital Northern Hospital Epping (Northern Health) Peninsula Private Hospital (Ramsay Health Care) Peter MacCallum Cancer Centre - Bendigo Peter MacCallum Cancer Centre - Box Hill Peter MacCallum Cancer Centre - Moorabbin Peter MacCallum Cancer Centre - Parkville Peter MacCallum Cancer Centre - Sunshine Portland District Health Rochester and Elmore District Health Service Rosebud Hospital (Peninsula Health) Royal Melbourne Hospital (Melbourne Health) Sandringham Hospital (Alfred Health) Shepparton Private Hospital (Ramsay Health Care) South Gippsland Hospital South West Healthcare (Warrnambool Base Hospital) St John of God - Ballarat St John of God - Bendigo St John of God - Geelong St John of God - Warrnambool St Vincent's Hospital Melbourne Sunshine Hospital (Western Health) Swan Hill District Hospital The Avenue Private Hospital (Ramsay Health Care) The Bays Private Hospital University Hospital Geelong Wangaratta Private Hospital (Ramsay Health Care) Wantirna Health (Eastern Health) Warringal Private Hospital (Ramsay Health Care) Waverley Private Hospital (Ramsay Health Care) West Gippsland Healthcare Group Western District Health Service Williamstown Hospital (Western Health) Yarra Ranges Health (Eastern Health) New South Wales Armidale Rural Referral Hospital Bankstown-Lidcombe Hospital Bathurst Base Hospital Belmont Hospital Blacktown Hospital Calvary Mater Hospital Campbelltown Hospital Chris O'Brien Lifehouse Cobar District Hospital Coffs Harbour Health Campus Coonabarabran District Hospital Dubbo Base Hospital Garvan Institute (St Vincent's Clinic) Gosford Hospital Grafton Base Hospital Griffith Hospital John Hunter Hospital (Royal Newcastle Centre) Lismore Base Hospital Liverpool Hospital Macquarie University Hospital Maitland Hospital Manning Rural Referral Hospital Mudgee District Hospital Nepean Hospital Orange Health Service Port Macquarie Base Hospital Prince of Wales Hospital Riverina Cancer Care Centre Royal North Shore Hospital Royal Prince Alfred Hospital Shoalhaven District Memorial Hospital St George Hospital St Vincent’s Hospital Sydney St Vincent’s Private Hospital Sydney Adventist Hospital Tamworth Rural Referral Hospital The St Vincent's Prostate Cancer Centre (St Vincent's Clinic) Wagga Wagga Base Hospital Walgett Health Service Westmead Hospital Wollongong Hospital Wyong Hospital Young Hospital Queensland Bayside Urology - Private Bowes Urology Brisbane Private Hospital Brisbane Prostate Clinic Brisbane Urology Clinic Buderim Private Hospital Cairns Hospital Coastal Urology Clinic Dr Kenneth P'ng Private Practice Dr Kenny Rao Urology East Coast Urology Genesis Care Gold Coast Private Hospital Gold Coast University Hospital Gold Coast Urology Greenslopes Private Hospital Greenslopes Urology Clinic Ipswich Hospital Ipswich Urology Jamie Reynolds Urology Jo Schoeman Urology Mackay Base Hospital Mackay Urology Mater Hospital Brisbane Mater Hospital Mackay Mater Private Hospital Townsville Northern Urology Northern Urology Clinic Oceanside Urology Patrick Dunne Urology Pioneer Urology Princess Alexandra Hospital QE II Jubilee Hospital Queensland Prostate Clinic Redcliffe Hospital Rockhampton Hospital Royal Brisbane and Women’s Hospital St Andrew's Hospital Toowoomba St Vincent's Private Hospital Northside Sunshine Coast Urology Clinic The Prostate Clinic (Gold Coast) Toowoomba Base Hospital Toowoomba Urology Townsville Hospital Townsville Urology UroBriz UroMed Watson Urology Wesley Hospital Wesley Urology Clinic Northern Territory Alice Springs Hospital Darwin Private Hospital Royal Darwin Hospital South Australia Ashford Hospital Calvary Central Districts Hospital Calvary North Adelaide Hospital Flinders Medical Centre Flinders Private Hospital Genesis Care - Calvary Central Districts Hospital Genesis Care - Flinders Private Hospital Genesis Care - St Andrew's Hospital Genesis Care - Tennyson Centre Lyell McEwin Hospital Modbury Hospital Naracoorte Hospital Noarlunga Hospital Royal Adelaide Hospital St Andrew's Hospital The Queen Elizabeth Hospital Western Hospital Tasmania Calvary Hospital – Lenah Valley Campus, Hobart Calvary Hospital – St John’s Campus, Hobart Calvary Hospital – St Luke’s Campus, Launceston Calvary Hospital – St Vincent’s Campus, Launceston Hobart Private Hospital Launceston General Hospital North Tas Urology - Launceston Royal Hobart Hospital Tamar Urology New Zealand Andy Malcolm Urology Auckland District Health Board Canterbury District Health Board Capital and Coast District Health Board Counties Manukau District Health Board Hawke Urology Hawke's Bay District Health Board Hutt Valley District Health Board Lakes District Health Board Merrilees Dawson Ltd MidCentral District Health Board Mischel Neill Urology Nelson Marlborough District Health Board North Shore Urology Northland District Health Board OneSixOne South Canterbury District Health Board Southern District Health Board Southern Urology Taranaki District Health Board UA Central Otago Urology Associates Urology BOP Urology Care Wellington Waikato District Health Board Wairarapa District Health Board Waitemata District Health Board West Coast District Health Board Whanganui District Health Board
ACSQHC-ARCR-106	Obesity	Nil	Bariatric Surgery Registry	BSR	https://www.monash.edu/medicine/sphpm/registries/bariatric	Ms Jennifer Holland, Monash University, med-bsr@monash.edu	2012	The Bariatric Surgery Registry is a population-based, observational, quality improvement study of persons with obesity who have had bariatric surgery. Its purpose is to gather and analyse information which is used to monitor the safety of bariatric surgery and enhance the quality of care received by persons undergoing bariatric surgery in Australia and New Zealand. Anyone who undergoes bariatric surgery in Australia or New Zealand is eligible for inclusion in the study. The registry collects information on the operation performed, who performed the operation, where the operation occurred, complications from the surgery, weight at various time points, and diabetes status and management. The incidence of adverse events (unplanned hospital readmission, unplanned return to theatre, unplanned ICU admission) and deaths related to bariatric surgery are monitored for ninety days after surgery for all participants. Clinical outcomes for participants who are enrolled with their initial bariatric procedure are assessed annually to determine long term health effects of having bariatric surgery by following weight/body mass index (BMI) changes, differences in managing diabetes in patients identified as diabetic, the need for revision surgery, and vital status.	Monash University	HREC/18/Alfred/75 (NMA 40238)	Feedback to contributing clinicians Reported in Annual Report Reported to State/Territory health departments Shared with hospital executive	PROMs for the Bariatric Surgery Registry are currently under development and planned for collection in 2022	Nil	Australian Capital Territory Calvary Bruce Private Hospital Canberra Hospital National Capital Private Hospital New South Wales Albury-Wodonga Private Hospital Baringa Private Hospital Belmont Hospital Calvary St Vincent's Hospital Calvary Riverina Hospital Campbelltown Private Hospital Concord Repatriation General Hospital Delmar Private Hospital Dubbo Private Hospital Dudley Private Hospital Gosford Hospital Gosford Private Hospital Holroyd Private Hospital Hurstville Private Hospital John Flynn Private Hospital John Hunter Hospital Kareena Private Hospital Lake Macquarie Private Hospital Lakeview Private Hospital Lingard Private Hospital Mater Sydney Hospital Nepean Private Hospital Newcastle Private Hospital North Shore Private Hospital Nowra Private Hospital Port Macquarie Private Hospital Prince Of Wales Private Hospital Royal North Shore Hospital Royal Prince Alfred Hospital Southern Highlands Private Hospital St George Private Hospital St Vincent's Private Hospital Lismore Strathfield Private Hospital Sydney Adventist Hospital Sydney Southwest Private Hospital Tamara Private Hospital Tuggerah Lakes Private Hospital Wagga Wagga Base Hospital Westmead Private Hospital Wollongong Private Hospital Northern Territory Darwin Private Hospital Queensland Brisbane Private Hospital Brisbane Waters Private Hospital Buderim Private Hospital Cairns Private Hospital Gold Coast Private Hospital Greenslopes Private Hospital Hillcrest - Rockhampton Private Hospital Ipswich Hospital Kawana Private Hospital Mater Private Hospital Bundaberg Mater Private Hospital Mackay Mater Private Hospital Rockhampton Mater Private Hospital (South Brisbane) Mater Private Hospital Townsville Nambour Selangor Private Hospital Noosa Private Hospital North West Private Hospital (Brisbane) Pindara Private Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Royal Brisbane & Women's Hospital St Andrew's - Ipswich Private Hospital St Andrew's War Memorial Hospital St John Of God Bunbury Hospital St Stephens Hospital Hervey Bay St Vincent's Private Hospital Northside St Vincent's Private Hospital Toowoomba Sunnybank Private Hospital Sunshine Coast University Private Hospital Sunshine Hospital The Wesley Hospital South Australia Ashford Hospital Calvary Adelaide Hospital Calvary Central Districts Hospital Calvary North Adelaide Hospital Flinders Medical Centre Flinders Private Hospital Royal Adelaide Hospital The Queen Elizabeth Hospital Western Hospital (SA) Tasmania Hobart Private Hospital Launceston General Hospital North West Private Hospital (Burnie) Royal Hobart Hospital Victoria Austin Health - Austin Hospital Austin Health - Heidelberg Repatriation Hospital Beleura Private Hospital Box Hill Hospital Cabrini Hospital - Brighton Cabrini Hospital - Malvern Epworth Eastern Hospital Epworth Freemasons Epworth Geelong Epworth Richmond Footscray Hospital Glen Iris Private Hospital Hamilton Hospital Holmesglen Private Hospital Jessie Mcpherson Private Hospital John Fawkner Private Hospital Knox Private Hospital Latrobe Regional Hospital Maryvale Private Hospital Mildura Base Hospital Mildura Health Private Hospital Mitcham Private Hospital Monash Medical Centre Mulgrave Private Hospital Northpark Private Hospital Norwest Private Hospital Peninsula Private Hospital Shepparton Private Hospital St John Of God Ballarat Hospital St John Of God Bendigo Hospital St John Of God Berwick Hospital St John Of God Geelong Hospital St John Of God Warrnambool Hospital St Vincent's Hospital Melbourne St Vincent's Private Hospital Fitzroy The Alfred Hospital The Bays Hospital Wangaratta Private Hospital Warringal Private Hospital Waverley Private Hospital Western Private Hospital (VIC) Williamstown Hospital Western Australia Bethesda Hospital Glengarry Private Hospital Hollywood Private Hospital Joondalup Health Campus Mount Hospital Peel Health Campus St John Of God Murdoch Hospital St John Of God Mt Lawley Hospital St John Of God Subiaco Hospital Waikiki Private Hospital New Zealand Anglesea Hospital Auckland City Hospital Boulcott Plus Health Chelsea Hospital Trust Christchurch Hospital Gisborne Hospital Grace Hospital Manuka Street Hospital Mercy Hospital Middlemore Hospital Ormiston Hospital Southern Cross Hamilton Southern Cross Christchurch Southern Cross North Harbour Southern Cross Wellington Southland Hospital St George's Hospital Tauranga Hospital Waikato Hospital Wakefield Hospital
ACSQHC-ARCR-107	Aortic valve Implant for Aortic Stenosis	Ischemic heart disease	Transcatheter Aortic Valve Implantation Registry	TAVI-R	https://acor.net.au/tavi-registry/	Anita Deakin, South Australian Health & Medical Research Institute, anita.deakin@sahmri.com	2018	The objective of the TAVI Registry (TAVI-R) is to define, improve and maintain the safety and quality of care for patients undergoing TAVI procedures. The TAVI-R aims to: Collect procedure, adverse event and outcome data from the entire TAVI population in Australia • Generate risk adjusted reports which identify areas of excellence and opportunities for improvements in the quality of TAVI care Provide an accurate and transparent assessment of the safety of the TAVI procedure and devices.	Australasian Cardiac Outcomes Registry	Bellberry HREC Reference No: 2017-10-754 & Southern Adelaide Clinical Human Research Ethics Committee Reference No: HREC/18/SAC/67	Feedback to contributing clinicians Feedback to contributing sites, industry and Cardiac Accreditation Services Limited Pty	Kansas City Cardiomyopathy Questionnaire (KCCQ-12) & EQ-5D 3L questionnaire completion pre-procedure and again at 30 days and 12 months post procedure	Nil	New South Wales Eastern Heart Clinic John Hunter Hospital Royal Newcastle Centre Lake Macquarie Private Hospital Liverpool Hospital Macquarie University Hospital North Shore Private Hospital Norwest Private Hospital Royal North Shore Hospital Royal Prince Alfred Hospital St George Private Hospital St Vincent's Private Hospital (Darlinghurst) Sydney Adventist Hospital Wesley Hospital Ashfield Queensland Greenslopes Private Hospital Gold Coast Private Hospital Gold Coast University Hospital John Flynn Private Hospital Princess Alexandra Hospital St Andrew's War Memorial Hospital St Vincent’s Private Hospital Northside Sunshine Coast University Hospital The Prince Charles Hospital South Australia Ashford Community Hospital Calvary Adelaide Hospital Flinders Medical Centre Flinders Private Hospital Royal Adelaide Hospital St Andrew's Hospital Inc Tasmania Royal Hobart Hospital Victoria Austin Health Cabrini Malvern Eastern Heart Clinic Epworth Richmond Jessie McPherson Private Hospital Knox Private Hospital Melbourne Private Hospital Monash Health Community Peninsula Private Hospital Royal Melbourne Hospital - City Campus St Vincent's Hospital (Melbourne) Ltd The Alfred University Hospital Geelong Western Australia Fiona Stanley Hospital Mount Hospital Sir Charles Gairdner Hospital St John Of God Hospital, Subiaco
ACSQHC-ARCR-109	Hepatitis C Liver Disease	Nil	An Observational Prospective Epidemiological Registry in Australia of Hepatitis C Virus Liver Disease	OPERA-C	Nil	Dr Paul Clark, Mater Adult Hospital, Brisbane Queensland Australia, drpjclark@gmail.com	2015	This is a prospective, multi-centre, observational, national registry of HCV infected patients. The purpose of the registry is to establish a prospective national registry of patients with HCV liver disease attending ALA CRN liver clinics and hepatitis treatment centres, to better understand the epidemiology, treatment outcomes and health care burden and costs of the HCV pandemic. The aims include: To describe the epidemiology of HCV infection in a prospective multicentre cohort of HCV infected patients To record baseline demographics, clinical, virologic and liver disease characteristics, and prior treatment status To characterise HCV treatment response and treatment limiting adverse event rates To assess the impact of treatment and virological response on patient outcomes To evaluate health care utilisation costs associated with chronic HCV infection. The population includes: Male and females ≥ 18 years of age Under the care of an ALA CRN liver clinic or hepatitis treatment centre for management of hepatitis C infection Evidence of current or prior HCV infection based on positive HCV RNA test by PCR Written informed consent.	Gastroenterology Society of Australia Liver Faculty	Royal Brisbane and Women's Hospital HREC/15/QRBW/183	Feedback to contributing clinicians Reported in Annual Report Shared with Gastroenteroly Society of Australia	Nil	Nil	Australian Capital Territory The Canberra Hospital New South Wales Bathurst Base Hospital Blacktown Hospital John Hunter Hospital Royal Newcastle Centre Liverpool Hospital Nepean Hospital Orange Health Service Royal Prince Alfred Hospital St George Hospital Westmead Hospital Queensland Princess Alexandra Hospital Rockhampton Base Hospital Royal Brisbane and Women's Hospital South Australia Flinders Medical Centre Lyell McEwin Hospital The Royal Adelaide Hospital Victoria The Alfred Austin Health - Austin Hospital Barwon Health - Geelong Hospital Campus Box Hill Hospital Latrobe Regional Hospital Mater Adult Hospital Monash Medical Centre - Clayton Campus St Vincent's Hospital (Melbourne) Ltd Western Australia Royal Perth Hospital Sir Charles Gairdner Hospital
ACSQHC-ARCR-127	Myelodysplastic Syndrome	High burden cancers	Myelodysplastic Syndrome Registry	MDSlink	www.monash.edu/medicine/sphpm/registries/mds	Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu	2018	The aims of the MDS Registry are to: Monitor access to care Benchmark outcomes nationally and internationally Explore variation in practice, process and outcomes Monitor trends in incidence and survival Explore the factors that influence outcomes including survival and quality of life Be a resource for clinical trials and further research – MDS Registry data on patterns of treatment and variation in patient outcomes allows evaluation of advances in therapy outside the setting of clinical trials, and will enable provision of the best possible care to people with MDS	Monash University	Monash Health Human Research Ethics Committee Reference: HREC/18/MonH/341	Feedback to contributing clinicians	Nil	Nil	Cabrini Hospital Melbourne Monash Health Austin Hospital Royal Adelaide Hospital
ACSQHC-ARCR-130	Knee and Hip Osteoarthritis	Musculoskeletal disorders	Arthroplasty Outcomes in Regional Australia	AORA	Nil	Corey Scholes, EBM Analytics, cscholes@ebma.com.au	2020	The Arthroplasty Outcomes in Regional Australia (AORA) registry is a clinical quality registry (self-reported) run on behalf of select orthopaedic surgeons in private practice in Grafton, NSW. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for knee or hip osteoarthritis. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice.	Dr Sam Martin, Specialist Orthopaedic Centre, Grafton, NSW	2020/ETH01498; North Coast NSW Local Health District HREC	Feedback to contributing clinicians Shared with other clinicians Reported in Annual Report Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis	Preoperative health questionnaire (self-developed) Veterans Rand-12 General Health Survey Musculoskeletal Outcomes Data Evaluation and Management System (MODEMs) preoperative expectations scale Acute recovery questionnaire (self-developed) MODEMs postoperative expectations met scale; Postoperative satisfaction Knee injury and Osteoarthritis Score (KOOS)-12 Hip disability and Osteoarthritis Outcome Score (HOOS)-12	Nil	New South Wales Specialist Orthopaedic Centre, Grafton
ACSQHC-ARCR-132	Eating disorders	Mental Health	The Lily Registry	Nil	https://saaim.com.au/lily-registry/	Janey Barrow, South Australian Health and Medical Research Institute, janey.barrow@sahmri.com	2023	This project aims to make use of a Learning Health System (LHS) approach towards the creation of a virtual clinical quality registry called The Lily Registry. The Lily Registry will include all patients with eating disorders identified as medically unstable upon admission to hospital, where instability is secondary to the eating disorder. The Lily Registry will enable excellence in inpatient care of people with medical complications of eating disorders by supporting best-practice multi-disciplinary care and continuous quality improvement.	South Australian Association of Internal Medicine	Central Adelaide Local Health Network HREC 2023/HRE00092	Feedback to contributing clinicians Shared with hospital executive Reported in Annual Report	Eating Disorder-15 (ED-15)	Nil	South Australia Flinders Medical Centre The Royal Adelaide Hospital Women’s And Children's Hospital
ACSQHC-ARCR-138	Immunisation	Nil	Surveillance of Adverse Events Following Vaccination in the Community	SAEFVIC	https://www.healthanalytics.org.au/about/research/	Professor Jim Buttery, Murdoch Children’s Research Institute, The Royal Children’s Hospital, jim.buttery@mcri.edu.au	2007	Adverse event following immunisation (AEFI) is ‘an unwanted or unexpected event following the administration of a vaccine(s). AEFIs may be caused by a vaccine(s) or may occur by coincidence: that is, it would have occurred regardless of vaccination’. AEFIs also include conditions that may occur following the incorrect handling and/or administration of a vaccine. SAEFVIC aims to provide increased early detection and appropriate rapid response to AEFI in adults and children, integrated with clinical support for reporting health care workers and patients/families within Victoria. The intention is to enhance the passive surveillance of all significant or rare AEFI, regardless of causality. The surveillance information is used to detect vaccine safety ‘signals’, prompt action and maintain confidence in immunisation programs. This collaboration aims to deliver a system with world-leading sensitivity for Victorian health authorities to rapidly detect and research vaccine safety concerns, whether they are new trends or just temporally associated events.	Murdoch Children’s Research Institute	The Royal Children’s Hospital Melbourne HREC Reference number 37914A	Shared with other clinicians Shared with consumers Reported to state/territory health departments Reported in other public reports	Adverse Events Following Immunisation	Nil	Victoria The Royal Children’s Hospital Murdoch Children’s Research Institute, University of Melbourne Department of Paediatrics
ACSQHC-ARCR-139	Coronary Angiography (diagnostic) Coronary angioplasty/stenting - percutaenous coronary intervention (interventional)	Ischemic heart disease	Coronary Angiogram Database of South Australia	CADOSA	http://www.cadosa.org	Rosanna Tavella, The University of Adelaide, and Central Adelaide Local Health Network, SA Health, rosanna.tavella@adelaide.edu.au	2012	The Coronary Angiogram Database of South Australia (CADOSA) Registry was established to provide a comprehensive data infrastructure of invasive coronary procedures in order to evaluate the delivery of quality health care thereby facilitating clinical improvement and supporting clinical coronary research. Established in 2012, the Registry now contains over 45,000 records, representative of public and private hospital clinical practice in the management of coronary artery disease. This unique Registry has attracted both national and international acclaim and continues to pioneer new innovations in clinical registry structure and function. Key Components: Quality Assurance Module contains baseline clinical, angiographic, procedural and discharge data for patients undergoing invasive diagnostic angiography with/without percutaneous coronary interventions (all consecutive in the South Australian public hospital are captured). Linkage with administrative datasets also enables the capture of future cardiovascular outcomes such as readmission to hospital and mortality. This data collection is compatible with the American College of Cardiology National Cardiovascular Data Registry (NCDR®), specifically the CathPCI Registry®. Health Outcome Module contains baseline, 1 and 12-month patient-reported outcome measures (PROMs) including symptomatic status, disease-associated physical impairment, quality of life, and depression. Evaluating these patient-related outcomes provides key insights into the effectiveness of clinical therapies and underscores the most aspect of healthcare delivery – our patients. The CADOSA PROMs collection is endorsed by ICHOM (International Consortium of Health Outcomes Measurement) as it captures the recommended standard data set for coronary artery disease.	The University of Adelaide	Central Adelaide Local Health Network HREC: HREC/15/TQEH/252	Feedback to contributing clinicians in the format of hospital-level or statewide reports. Clinical level reporting is not produced. Reported in Annual Report Shared with other clinicians Shared with hospital executive Shared with medical colleges Reported to State/Territory health departments in the format of statewide reports	The CADOSA Registry collects PROMs at baseline, and at 1 month and 12 month post discharge (via phone interview). The questionnaires administered include the Seattle Angina Questionnaire (SAQ), the ROSE Dyspnea Scale, the Euro-Qol 5D and the Patient Health Questionnaire (PHQ-9) for depression. The CADOSA PROMs module is compatible with the ICHOM Standard Set for Coronary Artery Disease.	Nil	The Royal Adelaide Hospital The Queen Elizabeth Hospital Lyell McEwin Hospital Flinders Medical Centre Calvary Adelaide
ACSQHC-ARCR-146	Osteoporosis and fractures	Musculoskeletal disorders	Australian and New Zealand Fragility Fracture Registry	ANZFFR	www.fragilityfracture.com.au	Kirtan Ganda, kirtan.ganda@sydney.edu.au, Concord Repatriation General Hospital	2022	The purpose of the ANZFFR is to use data to improve care and maximise outcomes for older people who have sustained a fragility fracture. Secondary Fracture Prevention programs or Fracture Liaison Services providing identification, assessment and treatment to people with a fragility fracture are eligible to participate in the ANZFFR. People aged 50 years and over who have sustained a fragility fracture are eligible for inclusion in the Registry. The ANZFFR evaluates care of people with fragility fractures against the Clinical Standards for Fracture Liaison Services in NZ (2021) and a set of internationally agreed Key Performance Indicators published in 2024 framed within the “5IQ” structure, encompassing the components of identification, investigation, information, intervention, integration and quality. This is used to identify variation in key aspects of care and clinical outcomes. The Registry feeds the evaluation back to the health system, and the clinicians who work in the system, to inform clinical practice and decision making. The aim of the Registry is to improve the quality and safety of fragility fracture care with the objective of maximising a person’s survival and functional independence after the fracture. The ANZFFR measures and reports against the quality statements and their indicators.^1,2 References: Osteoporosis New Zealand: Clinical Standards for Fracture Liaison Services in New Zealand 2^nd Edition. 2021: https://osteoporosis.org.nz/resources/health-professionals/clinical-standards-for-fls/ Javaid MK, Sami A, Lems W et al. (2020) A patient-level key performance indicator set to measure the effectiveness of fracture liaison services and guide quality improvement: a position paper of the IOF Capture the Fracture Working Group, National Osteoporosis Foundation and Fragility Fracture Network. Osteoporos Int 31:1193-1204	Australian Fragility Fracture Foundation	Sydney Local Health District Human Research Ethics Committee - Concord Repatriation General Hospital HREC reference: CH62/6/2022-094.	Feedback to contributing clinicians Shared with other clinicians Shared with consumers Reported in Annual Report	Nil	Nil	New South Wales Concord Repatriation Hospital Victoria Western Health Western Australia Sir Charles Gairdner Osborne Park Hospital Group New Zealand Auckland City Hospital Christchurch FLS Gisborne Hospital Hawkes Bay Hospital Hutt Hospital Middlemore Hospital Nelson Hospital Northshore Hospital Palmerston North Hospital Taranaki Base Hospital Tauranga Hospital Timaru Hospital Waikato Hospital Wairau Hospital Wellsouth Primary Health Network West Coast Whakatane Hospital Whanganui Hospital Whangarei Hospital
ACSQHC-ARCR-149	Endometriosis and adenomyosis	Nil	National Endometriosis Clinical and Scientific Trials Registry	NECST Registry	https://www.unsw.edu.au/research/necstnetwork/registry	Cecilia Ng, Jean Hailes for Women's Health, cecilia.ng@unsw.edu.au	2020	The NECST Registry is a national resource of standardised patient data that will facilitate high quality research aiming to understand the causes of endometriosis, improve diagnosis and treatment outcomes, and reduce the burden of disease for patients living with endometriosis, endometriosis-related symptoms, or endometriosis-related conditions (like adenomyosis). Population: Women and those assigned female at birth aged 18+, have had surgery which has confirmed that you have endometriosis or adenomyosis or have any of the following symptoms - persistent pelvic pains, problems with falling pregnant, excessive menstrual bleeding or bleeding between periods, heavy periods, pain when urinating, pain with bowel motions/passing stools and pain with sex. Data collection and outcomes: Health and clinical data are collected across eight modules 1. Consent and participant demographics 2. Clinical presentation and medical history 3. Patient reported outcome measures (PROMs; EQ-5D and EHP-30) 4. Environmental and lifestyle risk factors 5. Imaging tests 6. Medical management 7. Surgical management 8. Histopathology	University of New South Wales (UNSW)	Monash Health HREC/62508/MonH-2020	Feedback to contributing clinicians Shared with consumers Reported to Federal Health Department Annual Progress report to ethics	EuroQol EQ-5D-5LC Endometriosis Health Profile EHP-30	To be determined	New South Wales Prince Of Wales Private Hospital Royal Hospital For Women St George Hospital Westmead Hospital South Australia Women's and Children's Hospital Victoria Monash Health Royal Women's Hospital
ACSQHC-ARCR-150	Breast, colorectal, lung, prostate and ovarian cancer	High burden cancers	Continuous Improvement in Care - Cancer Project CLOSED	CIC Cancer	Nil - closed	Nil - closed	2020	The Continuous Improvement in Care – Cancer (CIC Cancer) Project is a multi-institutional program of research that seeks to bring value-based healthcare (VBHC) to public and private healthcare settings in Western Australia (WA). The project aims to create value through improving outcomes whilst containing costs (www.ciccancer.com). This is achieved through measuring and acting on variations in outcomes that are important for people diagnosed with breast, colorectal, lung, prostate and ovarian cancer. The results of combined clinical and patient-reported outcome measures will feed back into clinical management processes to improve care; help determine needs for clinical intervention and allow units to assess and improve their practices.	University of Western Australia	South Metropolitan Health Services HREC RGS 1117 and St John of God Health Care #1422	Feedback to contributing clinicians - planned Reported to State/Territory health departments - planned Shared with consumers - planned Shared with hospital executive - planned Shared with other clinician - planned	Consortium for Health Outcomes Measurement International (ICHOM) data sets and developed dataset for ovarian cancer.	Nil	Western Australia Fiona Stanley Hospital King Edward Memorial Hospital Royal Perth Hospital St John Of God Hospital, Subiaco St John Of God Midland Public & Private Hospital
ACSQHC-ARCR-157	Aged care	Nil	Registry of Senior Australians	ROSA	www.rosaresearch.org	Sarah Bray, South Australian Health and Medical Research Institute (SAHMRI) ROSA@sahmri.com	2017	The Registry of Senior Australians (ROSA) is a cross-sectoral data platform designed to monitor the health, service utilisation, medication use, mortality, and other outcomes of people receiving aged care services in Australia. ROSA brings together datasets collected from the aged care and health care sector by the Commonwealth and state health authorities, to provide us with a full picture of the ageing pathway for individuals in aged care. ROSA produces evidence to guide decision-making for quality, coordinated, efficient, innovative and age-friendly services and practices. Like other Australian clinical quality registries, ROSA was designed to monitor the effectiveness and appropriateness of aged care services provided to older Australians and to identify variance and advise on best practices. In addition to conducting comprehensive reviews of its captured population, including evaluations of aged care pathways and service utilisation, ROSA also has an 'Outcome Monitoring System' of quality and safety indicators for aged care providers and facilities.	South Australian Health and Medical Research Institute (SAHMRI)	SA Department for Health and Wellbeing Human Research Ethics Committee HREC/17/SAH/125, approved 01/03/2018 and AIHW Ethics Committee EO2018/2/429, approved 08/05/2018	Reported in an annual report Reported in other public reports Shared with clinicians Shared with consumers Reported to aged care providers, aged care providers peak bodies, policy makers (i.e. Aged Care Quality and Safety Commission, Royal Commission into Aged Care Quality and Safety)	Nil	Nil	Not applicable. ROSA is a registry that monitors South Australians seeking aged care services each year. It uses existing information captured by the Commonwealth National Aged Care Data Clearinghouse, Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and the National Death Index, linked to South Australian hospitalisation, emergency department presentations and ambulance services datasets to monitor its cohort. By bringing together these diverse datasets it captures the whole picture of the ageing pathway.
ACSQHC-ARCR-165	Prostate cancer	High burden cancers	TrueNTH Global Registry - Prostate Cancer Outcomes	TNGR	Nil	Krupa Krishnaprasad and Nik Zeps, Monash University, pco_dcc@monash.edu	2017	The TrueNTH Global Registry is an international project funded by the Movember Foundation. The aim of this registry is to significantly improve quality of care and the attendant patient‐centred outcomes in men with localised prostate cancer globally. The specific objective is to leverage existing infrastructures and relationships to build success and experience within the assembled registry team. The registry involves the collection of prospectively‐collected dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised prostate cancer.	Monash University	HREC/16/Alfred/98	Shared with principal investigators from each participating countries Feedback to contributing clinicians	The EPIC‐26, the EORTC QLQ‐PR25, the Utilisation of Sexual Medications/Devices questions taken from a paper by Miller et al.	Nil	Australian Urology Associates in Melbourne Australia Garvan Institute of Medical Research in NSW Australia Australian Prostate Cancer Research Centre - Queensland, QUT for the South East Queensland Consortium of Participating Sites Centre for Health Outcome Measures New Zealand MedUniWien in Austria Princess Margaret Cancer Centre in Canada Thomayer Hospital in Prague German Cancer Society in Berlin Molecular Medicine Ireland in Dublin Prince of Wales Hospital in Hong Kong University of Naples Federico II in Naples Fondazione IRCCS Istituto Nazionale dei Tumori and IRCCS Ospedale San Raffaele in Milan Santeon in Utrecht Cancer Registry of Norway IMIM (Hospital del Mar Research Institute) in Barcelona University of Southampton in Southampton (UK) University of Michigan in Ann Arbor University of California Los Angeles (UCLA) Urology Vanderbilt University Medical Center in Nashville (Tennessee) Sloan Kettering Institute for Cancer Research in New York
ACSQHC-ARCR-170	Diabetes	Diabetes	Australian National Diabetes Audit	ANDA	https://www.monash.edu/medicine/anda	Sophia Zoungas, School of Public Health and Preventive Medicine - Monash University, sophia.zoungas@monash.edu	2013	The Australian National Diabetes Audit (ANDA) is a well-established, biennial, quality activity facilitated by the National Association of Diabetes Centres, in services providing care for people with diabetes across Australia (all states and territories). Participating diabetes centres including primary, secondary and tertiary care receive an individualised report of their patient data on the clinical status and outcomes of individuals attending services providing diabetes care across the country. The aim of ANDA is for diabetes centres to use this information for quality improvement and benchmarking purposes. ANDA captures patients aged over 18 years with diabetes attending participating centres across Australia. The outcomes collected alternate each year through the following audits: 1. ANDA-AQCA (Australian Quality Clinical Audit) – The focus is on clinical indicators known to impact on the outcomes of the person with diabetes 2. ANDA-AQSMA – (Australian Quality Self-Management) – the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected.	Monash University	Monash Health HREC/17/MonH/117	Reported in Annual Report Shared with clinicians Shared with consumers Shared with hospital executive Shared with medical colleges Site report available to participating sites for benchmarking purposes.	During the ANDA-AQSMA data collection, the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected.	During the ANDA-AQSMA data collection, the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected.	Australian Capital Territory ACT Health Diabetes Service National Health Cooperative New South Wales Albury Wodonga Aboriginal Health Service Albury Wodonga Health - Albury Campus Baker Heart and Diabetes Institute Ballina Byron Diabetes Centre Bankstown-Lidcombe Hospital Blacktown Hospital Calvary Mater Newcastle Clarence Diabetes Service Emerald Medical Group Gardens Medical Group GNS Diabetes Service Newcastle Healthfocus Family Practice Illawara Shoalhaven Diabetes Service Lismore & District Diabetes Centre Liverpool Diabetes and Endocrine Service Macarthur Diabetes and Endocrine Service Murrumbidgee Local Health District Mount Druitt Hospital Prince Of Wales Hospital Royal North Shore Hospital Royal Prince Alfred Hospital South West Hospital & Health Service St Vincent’s Diabetes Service - Darlinghurst Toukley Family Practice Westmead Hospital Northern Territory Alice Springs Hospital Healthy Living NT Alice Springs Healthy Living NT Darwin Queensland Acacia Ridge National Diabetes Centre Brisbane South Complex Diabetes Service Cairns Diabetes Centre Chronic Disease Diabetes Logan Gold Coast University Hospital Ipswich Diabetes Service Logan & Beaudesert Diabetes Services Princess Alexandra Hospital Queensland Diabetes and Endocrine Centre - Mater Health Redland Hospital Sunshine Coast Diabetes & Endocrinology Service Toowoomba Diabetes Service The Townsville Hospital Tweed Byron Diabetes Service Whitsunday Doctors Service South Australia GP Plus Noarlunga Intermediate Care - Diabetes Services Lyell Mcewin Hospital Repatriation General Hospital Daw Park The Royal Adelaide Hospital Tasmania John Morris Diabetes Centre - Launceston General Hospital North West Diabetes Centre Royal Hobart Hospital Victoria Access Health and Community - Hawthorn & Doncaster sites Alexandra District Health The Alfred Ballarat Health Services - Base Hospital Barwon Health Barwon Health - Community Diabetes Service Barwon Health - Geelong Hospital Campus Beechworth Health Service Benalla Community Health Bendigo Diabetes and Endocrine Centre Bendigo Health - Beechworth Health Service Bendigo Primary Care Centre Cabrini Hospital - Malvern Castlemaine District Community Health Centre Cobram District Health Green Street Specialists Dandenong Hospital Eastern Health Echuca Regional Health Frankston Hospital Gateway health Wangaratta Gateway Health Wodonga Gippsland Southern Health Service - Leongatha Campus Geelong Endocrinology and Diabetes Goulburn Valley Health - Shepparton Campus Kensington Hill Medical Centre Kyabram & District Health Services Monash Health Community Monash Medical Centre - Clayton Campus Mount Gambier Community Health Service - SERCHS Nathalia District Hospital Nexus Primary Health Northeast Health Wangaratta Northern Health Numurkah District Health Service Ovens and King Community Health Service - Wangaratta Royal Melbourne Hospital - City Campus Preston Market Medical Centre Seymour Health St Vincent’s Public Hospital, Melbourne Tallangatta Health Service Warrnambool Medical Clinic Werribee Mercy Hospital Western Health Western Australia Bentley Hospital CAHS Diabetes Service Perth Kalgoorlie Health Campus Perth Children's Hospital Rockingham General Hospital Royal Perth Hospital Sir Charles Gairdner Hospital Trigg Health Care Centre
ACSQHC-ARCR-175	Dental Implant treatment outcomes	Nil	Dental Implant Registry	DIR	https://www.dentalimplantregistry.org.au/	Kellie MacDonald, Dental Impact Registry, Adelaide, kellie@dentalimplantregistry.org.au	2016	The Dental Implant Registry (DIR) is a comprehensive, web-based registry established to improve the safety, effectiveness, and long-term outcomes of dental implant components and procedures in Australia and New Zealand. The Therapeutic Goods Administration (TGA), has classified dental implants as a Type IIb medical device, indicating a moderate to high risk level. Its primary aim is to collect and analyse data to enhance patient outcomes and improve clinical practice. The DIR supports research into risk factors, procedural techniques, and patient demographics while fostering collaboration among dental practitioners, manufacturers, and regulatory bodies to minimise complications such as infections, fractures, or loosening of implants. Participants include adults aged 18 and over residing in Australia or New Zealand who consent to provide the required Minimum Data Set (MDS). Governance is overseen by the DIR Steering Committee, comprising dental professionals, industry representatives, and experts in ethical research. The DIR also has an established Research Committee actively overseeing and supporting research initiatives. By engaging practitioners, researchers, and manufacturers, the DIR aims to educate dental professionals, refine manufacturing processes, and ultimately improve long-term implant success rates. Additionally, it facilitates participant recruitment for research and provides confidential feedback to treating parties, fostering a shared commitment to advancing dental implant care across the region.	Implant Registries Pty Ltd	Ethics approval received - Bellberry HREC, Application No: 2023-04-385	Via journal article publication Bespoke reports	Nil	Nil	Participating sites include private dental clinics, dental specialists in Australia & New Zealand. Please contact the registry for further information about participating sites.
ACSQHC-ARCR-176	Integrative healthcare treatment (blending of evidence-informed complementary medicine therapies with conventional healthcare)	Nil	Western Sydney Integrative Health (WSIH) Patient Registry Pending, not operational at time of publication	WSIH Patient Registry	https://www.westernsydney.edu.au/nicm/western_sydney_integrative_health	Suzanne Grant,NICM Health Research Institute, Western Sydney University, S.Grant@westernsydney.edu.au	2020	The evaluation of WSIH is an ongoing, prospective observational study of patients attending WSIH and the practitioners and staff that care for them. Data collected will contribute to a patient registry, which will store data and enable observation of patient reported outcomes (PROs). Developed and managed by Western Sydney University, the WSIH Patient Registry is the first nationwide database of its kind, and will be used to evaluate patient-reported outcomes (PROs) over time, such as quality of life, pain, mood, and stress, for patients who supplement conventional healthcare with therapies such as acupuncture, yoga, and mindfulness. This registry will perform prospective surveillance of participants attending the WSIH centre for clinical services. The registry combines de-identified patient-reported data with information from the Electronic Health Records documenting patient visit details, procedures offered, diagnosis, and patient pain-assessment score, as well as linkage with health information from Commonwealth administrative and other external datasets. The WSIH Patient Registry will evaluate whether PROs differ with the frequency and duration of each particular intervention, while also tracking variables based on multiple characteristics of the participants, such as age, gender, ethnicity, race, and clinical condition. Essential data elements that capture PROs (based on patient response to questionnaires) and measures of clinical activity will be obtained comparing their baseline with results at 3, 6, 12, 18 and 24 months.	Western Sydney University	Western Sydney University HREC: H13419	The following are planned: Reported in Annual Report Reported in other public reports Shared with other clinicians Shared with consumers Shared with medical colleges Summaries of results will be made available to investigators for dissemination within their clinics (where appropriate and according to discretion) De-identified and summated reports will be available to all stakeholders (including clinicians working at WSIH) and patients attending WSIH on which other written and oral presentations will be based Future sharing may also include sharing the information and/or reports with other researchers and collaborators. Initially, third-party disclosure will not apply, and in the future, any third parties wishing to access data and publish findings must seek approval from the WSIH Data Governance Steering Committee and obtain relevant Institutional Ethics Committee endorsement where identified or re-identifiable data is sought.	It is intended that the following PROMs will be collected: MYCAW PROMIS-29 Perceived Stress Scale-4 (PSS-4)Work Productivity and Activity Impairment (WPAI) questionnaire Adverse events Condition-specific PROMs as follows: Brief Fatigue Inventory Godin Leisure Time Questionnaire Pittsburgh Sleep Quality Index Generalised Anxiety Disorder Scale (GAD-2) Depression and Anxiety Stress Scale (DASS-21) PROMIS Adult Short Forms (cover a range of symptoms and enable measurement of these to establish progress in treatment from baseline) Brief Pain Inventory (BPI) Pain Self-Efficacy Questionnaire (PSEQ) Pain Catastrophising Scale (PCS) Edmonton Symptom Assessment Scale (ESAS) Xerostomia Inventory Hamilton Anxiety and Depression Scale (HADS) Berkman-Syme Social Network Index (SNI) Functional Assessment of Cancer Therapy - General MD Anderson Symptom Inventory (MDASI) Core Items PAID Scale (Diabetes) Western Ontario and McMasters Osteoarthritis Index (WOMAC)	It is intended that the following PREMs will be collected: Patient satisfaction survey Health Education Impact Questionnaire (HeiQ) Patient Assessment of Chronic Illness Care (13-item version) Care Coordination Quality Measure for Primary Care (CCQM-PC)	Western Sydney Integrative Health
ACSQHC-ARCR-177	Stroke	Stroke	Australian Stroke Clinical Registry	AuSCR	https://auscr.com.au/	Dominique Cadilhac, The Florey Institute of Neuroscience and Mental Health,admin@auscr.com.au	2009	The AuSCR provides a platform for participating hospitals to collect data on processes of care and outcomes for patients admitted with acute stroke or transient ischaemic attack (TIA). Data are used to improve the quality of stroke care nationally. The process of care variables collected align with the National Clinical Guidelines for Stroke Management. The AuSCR Office centralises the collection of follow-up data on patient reported outcomes three to six months after admission. Outcomes collected include stroke recurrence, hospital readmission, health status, disability (as measured with the modified Rankin Scale), and quality of life measures (using the EuroQol EQ-5D-3L and Visual Analogue Scale).	The AuSCR is led by a consortium comprised of the Florey Institute of Neuroscience and Mental Health (The Florey), the Australian and New Zealand Stroke Organisation (formerly Stroke Society of Australasia), Stroke Foundation and Monash University. The Florey Institute is the Data Custodian.	In general each state has a lead HREC. Some states also have multiple HRECs as some hospitals do not accept the approval of other committees.	Reported in Annual Report Shared with clinicians Shared with consumers Shared with government funding bodies (in some states) Feedback to contributing clinicians Reported to State/Territory health departments	Survivor status Place of residence Living alone status Subsequent stroke since discharge Readmission to hospital Quality of life indicators (EuroQOL EQ-5D-3L) Modified Rankin Scale Would like an information pack from the Stroke Foundation	Nil	https://auscr.com.au/about/list-of-participating-hospitals/ Australian Capital Territory Canberra Health Service North Canberra Hospital New South Wales John Hunter Children's Hospital Queensland Bundaberg Hospital Caboolture Hospital Cairns Hospital Gold Coast University Hospital Hervey Bay Hospital Ipswich Hospital Logan Hospital Mackay Base Hospital Mater Hospital Brisbane Prince Charles Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Queensland Children’s Hospital Redcliffe Hospital Redland Hospital Rockhampton Hospital Royal Brisbane and Women’s Hospital Sunshine Coast University Hospital Toowoomba Hospital Townsville University Hospital South Australia Flinders Medical Centre Lyell McEwin Hospital Riverland Regional Health Service – Berri Campus Royal Adelaide Hospital Tasmania Launceston General Hospital North West Regional Hospital Royal Hobart Hospital Victoria Albury Wodonga Health – Albury Campus Albury Wodonga Health – Wodonga Campus Alfred Hospital Austin Hospital Bairnsdale Regional Health Service Bass Coast Health Bendigo Health Box Hill Hospital Central Gippsland Health Service Echuca Regional Health Goulburn Valley Health Grampians Health Ballarat Grampians Health Horsham Hamilton Base Hospital Latrobe Regional Health Mildura Base Public Hospital Monash Children’s Hospital Monash Medical Centre Northern Hospital Peninsula Health – Frankston Hospital Royal Children’s Hospital Royal Melbourne Hospital St Vincent’s Hospital Victoria Sunshine Hospital – Western Health Swan Hill District Health University Hospital Geelong Warrnambool Base Hospital Werribee Mercy Hospital West Gippsland Hospital Western Australia Fiona Stanley Hospital Joondalup Health Campus Royal Perth Hospital Sir Charles Gairdner Hospital St John of God Midland Public Hospital
ACSQHC-ARCR-181	Cancer	High burden cancers	South Australian Clinical Cancer Registry	SACCR	https://www.wellbeingsa.sa.gov.au/evidence-data/south-australian-cancer-registry	Helen Thomas, Director, Epidemiology Branch, Wellbeing SA, Helen.Thomas2@sa.gov.au	1987	The South Australian Clinical Cancer Registry monitors and provides information on the safety and quality of cancer care in the health system, and provides information for the evaluation of any new treatments or models of care and for research purposes. The SACCR collects data including clinically derived stage, grade, differentiation, treatments, prognostic indicators for patients treated at participating South Australian hospitals. This collection complements the population-based SA Cancer Registry. Historically a number of cancer sites were collected, current priority cancer types with the SACCR collection include breast, colorectal, lung, melanoma and gynaecological cancers.	Wellbeing SA (attached office of the Department for Health and Wellbeing)	Quality improvement initiative. The registry is gazetted and authorised under Part 7 section 64 of the Health Care Act 2008 (SA).	Shared with clinicians upon request Feedback to contributing clinicians Publications in collaboration with clinicians and HREC approvals Long term plans are to provide these data for data analysis in aggregate format using internal visualisation tools and reporting systems within the Department for Health and Wellbeing	Nil	Nil	South Australia Flinders Medical Centre The Queen Elizabeth Hospital The Royal Adelaide Hospital
ACSQHC-ARCR-189	People with a Fontan circulation	Neonatal critical care	Australian and New Zealand Fontan Registry	ANZ Fontan Registry	https://www.fontanregistry.com	Rachael Cordina, Royal Prince Alfred, rachael.cordina@sydney.edu.au	2009	A normal heart comprises two pumping chambers called ventricles. Being born with a single ventricle is one of the most severe conditions in newborns with projected mortality of 25-40% within the first 4 years of life. A series of operations provide a lifeline to these patients. The last of these is the Fontan procedure; a procedure performed at around 4 years of age, that connects the veins directly to the pulmonary arteries. It was long believed that these surgeries would not result in long-lasting survival, however, under the leadership of the Australian and New Zealand Fontan Registry (ANZ Fontan Registry), it has now been demonstrated that survival 35 years after Fontan will reach 85%. The ANZ Fontan Registry is the largest database of patients surviving with a single ventricle and the only population-based registry of Fontan patients’ data. It aims to facilitate a greater understanding of these patients’ short and long term health outcomes, as well as factors which can be modified to improve their health and wellbeing. Being the largest registry of its kind, and with strong partnerships between multiple sites throughout Australia and New Zealand, the ANZ Fontan Registry enables high-quality research (including clinical trials) to be conducted in order to optimise and standardise care for this population.	Murdoch Children's Research Institute	Royal Children's Hospital Melbourne HREC 36260	Reported in Annual Report Reported in other public reports Shared with clinicians Shared with consumers Shared with hospital executive Peer-reviewed publications Conference presentations Annual Fontan Education Day Feedback to contributing clinicians Reported to state/territory health departments	PedsQL and Patient PCQT questionnaires across various projects but not routinely	PedsQL and Patient PCQT questionnaires across various projects but not routinely	New South Wales Royal Prince Alfred Hospital Heart Centre for Children – The Children’s hospital at Westmead Queensland Queensland Children’s Hospital Prince Charles Hospital South Australia Royal Adelaide Hospital Victoria Royal Children’s Hospital Royal Melbourne Hospital Monash Health Melbourne Western Australia Perth Children’s Hospital Royal Perth Hospital New Zealand Starship Hospital Auckland District Health Board
ACSQHC-ARCR-195	Perioperative Medicine, Anaesthesia and Surgery	Nil	Australian & New Zealand College of Anaesthetists Perioperative Clinical Outcomes Registry: Pilot	ANZCA PCORE: Pilot	Nil available	Dr Jennifer Reilly, Monash University/Alfred Hospital, jennifer.reilly@monash.edu	2020	The aim of ANZCA PCORE: Pilot is to develop a pilot population-based perioperative clinical quality registry to optimise quality of care provided to individuals undergoing anaesthesia and surgery, in accordance with the Operating Principles of the Framework for Australian Clinical Quality Registries. The target population is adults undergoing inpatient non-cardiac surgery (requiring a hospital stay of at least 1 night postoperatively). Public and private hospitals in each state and territory of Australia are invited to join ANZCA PCORE: Pilot. ANZCA PCORE: Pilot plans to collect a minimum dataset of perioperative risk factors, process of care data (including critical care admission) and mortality data to provide: Measurement of perioperative risk factors and mortality outcomes Risk adjusted benchmarking of hospital performance Identification of outlying hospitals Mortality risk prediction modelling Population-level epidemiological data to inform clinical trials and cohort studies Facilitation of registry-based cohort studies The pilot registry will initially be based at Monash University but has ethics approval to be hosted at the Australian Institute of Health and Welfare in Canberra and enabled for data linkage to the ANZICS CORE Registries and the National Death Index.	Monash University	Alfred Hospital HREC - Project 60317	Feedback to contributing clinicians Shared with medical colleges	The registry has ethics approval to collect PROMS as per the ICHOM standard sets.	Nil	Australian Capital Territory To be advised New South Wales John Hunter Hospital Gosford Hospital (pending) Prince of Wales Hospital Royal Prince Alfred Hospital Westmead Hospital Northern Territory Royal Darwin Hospital (pending) Queensland Metro South Hospital and Health Service (Princess Alexandra Hospital, Queen Elizabeth II Jubilee Hospital, Logan Hospital) Ipswich Hospital South Australia Flinders Medical Centre Lyell McEwen Hospital Tasmania To be advised Victoria Alfred Health Austin Hospital Peter MacCallum Cancer Centre Dandenong Hospital Geelong Hospital Northern Hospital (pending) Western Australia St John of God Health Care Subiaco Fiona Stanley Hospital
ACSQHC-ARCR-196	Thyroid Cancer	High burden cancers	Australian and New Zealand Thyroid Cancer Registry	ANZTCR	www.anztcr.org.au	Dr Liane Ioannou, Monash University, anztcr@monash.edu	2017	The purpose of the ANZTCR is to develop a population-based thyroid cancer clinical quality registry to monitor and improve the quality of care provided to individuals diagnosed with thyroid cancer in Australia and New Zealand. The aim of the ANZTCR is to optimise clinical care by capturing clinical data for all newly diagnosed thyroid cancer patients. The population includes patients aged ≥ 16 years that have been newly diagnosed, assessed or treated for thyroid cancer at a participating site within the timeframe for inclusion. The ANZTCR uses an opt-out approach to minimise selection bias and to achieve near 100% coverage of the eligible population. To benchmark clinical care, a consensus set of clinical quality indicators were developed using a modified-Delphi approach (MUHREC #11117). A minimum dataset has been developed to measures outcomes regarding key diagnostic, pathological, clinical, treatment, complications and outcomes from diagnosis to 90-days post-thyroid cancer diagnosis as well as recurrence (if applicable).	Monash University	HREC/16/Alfred/61	Feedback to contributing clinicians Shared with clinicians Reported in Annual Report Shared with hospital executive Shared with medical colleges	Not yet collecting PROMs but is planning to in the future	Nil	https://anztcr.org.au/index.php/about/participating-health-services-and-districts/ Victoria Alfred Hospital Monash Health (Monash Medical Centre Clayton, Monash Medical Centre Moorabbin, Dandenong Hospital) Western Health (Footscray Hospital, Sunshine Hospital, Williamstown Hospital, Sunshine Radiation Therapy Centre) Frankston Hospital Royal Melbourne Hospital St Vincent's Hospital Melbourne St Vincent's Private Hospital Melbourne Peninsula Private Hospital New South Wales Hornsby Hospital Royal North Shore Hospital John Hunter Hospital Newcastle Private Hospital The Mater Hospital Maitland Private Hospital Dudley Private Hospital Lake Macquarie Private Hospital Royal North Shore Private Hospital South Australia Royal Adelaide Hospital Flinders Medical Centre The Queen Elizabeth Hospital Queensland Metro South Health (Radlan Hospital, Logan Hospital) North West Private Hospital Greenslopes Private Hospital Townsville Hospital The Wesley Hospital Brisbane
ACSQHC-ARCR-199	Prostate Cancer	High burden cancers	South Australian Prostate Cancer Clinical Outcomes Collaborative	SA-PCCOC	https://www.prostatehealth.org.au/	Michael O'Callaghan, Flinders Medical Centre, michael.ocallaghan@health.sa.gov.au	1998	A comprehensive population based clinical quality registry for South Australia. The overall objective of the database is to evaluate the standard of care for men with prostate cancer in South Australia by monitoring the outcomes of that care over time.	Flinders Medical Centre	307.14; Southern Adelaide Clinical HREC	Feedback to contributing clinicians Shared with clinicians Annual report	PROMS Function – Patient assessment of urinary, sexual, and bowel function at 12 months post treatment. PROMS Bother – Patient assessment of urinary, sexual, and bowel bother at 12 months post treatment.	EPIC-26, IPSS, plus demographics	Royal Adelaide Hospital The Queen Elizabeth Hospital Flinders Medical Centre/Repatriation General Hospital Noarlunga Hospital Lyell McEwin Calvary North Adelaide Hospital St Andrews Hospital Ashford Hospital, Genesis Care
ACSQHC-ARCR-203	Anaesthesia for day surgery	Nil	Day Care Anaesthesia Outcomes Registry	DayCOR	https://www.daycorregistry.com.au	Dr Ken Sleeman, kensleeman@gmail.com Dr Nicole Tan, niki.tan@anaestheticservices.com.au	2018	In 2016–2017, 2.34 million anaesthetics were performed for day surgery procedures in Australia. Currently there is no established method to determine the quality of recovery in these patients, hence we do not know which patients experience suboptimal outcomes. This evidence gap has implications for patient care, and quality improvement initiatives at clinician, hospital and state levels. DayCOR is a software system which collects, alerts, manages and analyses patient demographic and patient-reported data. A survey link is automatically sent to patients via SMS and email 24 hours after discharge, with a reminder at 48 hours. Clicking the link opens their web-based survey. After a short introduction, patients opt in to a 15-question review consisting of clinical, process and patient experience questions. The aims of this registry: Collect patient-reported outcomes after anaesthesia for day surgery Alert anaesthetists and nurses to post-discharge adverse events after anaesthesia for day surgery Report de-identified data to clinicians, hospital/day facility (‘site’) management and other stakeholders. The target population is all admitted patients who undergo anaesthesia or sedation for day surgery. Clinical outcomes are degree of pain, nausea/vomiting, sleep quality, confusion, falls, ability to return to usual activities; process outcomes are analgesia and antiemetic availability and effectiveness, adherence to postoperative and medication instructions, requirement for post-discharge medical contact; patient experience outcomes are positive and negative hospital experiences, and suggestions to improve health care. Any concerning responses such as pain or prolonged vomiting are automatically emailed to the treating anaesthetist and site administrator.	Day Care Anaesthesia Special Interest Group, Australian Society of Anaesthetists	Bellberry HREC: 2020-06-589-A-1	Shared with clinicians Shared with hospital executive Potential to report to all stakeholders Feedback to contributing clinicians as immediate automated feedback of clinical problems, and downloadable reports benchmarking individual clinician against others	Pain score, response to analgesia Nausea and vomiting score, response to antiemetics Sleep quality Confusion Falls Optional Frailty Scale measurement	Urgent post-discharge contact required Adherence to post-operative instructions Adherence to medication instructions Return to normal activities Positive hospital experience Negative hospital experience Suggestions to improve care Request for further contact	Victoria Epworth Richmond Epworth Eastern Epworth Freemasons Clarendon Street Epworth Freemasons Victoria Parade Victorian anaesthetic groups - Geelong Anaesthetic Group Queensland Sunshine Coast University Private Hospital
ACSQHC-ARCR-213	Mental Health	Mental Health	Australian Interventional Pharmacotherapy and Psychedelic-Assisted Psychotherapy Research Registry	AIPPAP Research Registry	https://medicalschool.anu.edu.au/research/projects/australian-interventional-pharmacotherapy-psychedelic-assisted-psychotherapy	Paul Fitzgerald, The Australian National University, papregistry@anu.edu.au	2023	The purpose of the AIPPAP Research Registry is the collection of outcome and safety data on the use of novel interventional pharmacotherapy approaches, including ketamine treatment and psychedelic-assisted psychotherapy for mental health disorders. The AIPPAP Research Registry will include any patients receiving MDMA, psilocybin, or ketamine who are referred by their treating physician and consent to participate in data collection. The outcomes measured will depend on their diagnosis.	The Australian National University	Monash Health Human Research Ethics Committee RES-20-0000-612E	Registry website Peer-reviewed publications With the participants consent, clinical outcome data can be reported to their treating doctor/team via an automated system	Various PROMS to measure changes in depression, post traumatic stress disorder, obsessive-compulsive disorder , and other psychiatric symptoms, including: Patient Health Questionnaire-9 (PHQ-9); Impact of Event Scale-Revised (IES-R) (PTSD only); Obsessional Compulsive Inventory - Revised (OCI-R) (OCD only); Generalize Anxiety Disorder 7 - Item (GAD-7); Depression Anxiety and Stress Scale 21 (DASS-21); The Stanford Expectations of Treatment Scale (SETS); Ten Item Personality Inventory (TIPI); Side Effects; Assessment of Quality of Life (AQoL-8D); Psychological Insight Questionnaire (PIQ); Revised Mystical Experience Questionnaire (MEQ30); Multidimensional Health Locus of Control (MHLC); Collaborative Assessment and Management of Suicidality (CAMS); Self-efficacy to Manage Chronic Disease (SEMCD)	Nil	No sites. Registry works by referral by treating physician/team.
ACSQHC-ARCR-217	Palliative Care	Nil	Australian Palliative Care Outcomes Registry	APCOR	https://www.uow.edu.au/australasian-health-outcomes-consortium/pcoc/research-ethics-and-governance/australian-palliative-care-outcomes-registry/	Dr Lisa Redwood, University of Wollongong, apcor-coord@uow.edu.au	2024	The Australian Palliative Care Outcomes Registry (APCOR) holds identified clinical data from individuals who have received palliative care across Australia. This data is submitted by participating hospitals and palliative care services to support research and drive improvements in care quality. Originally established as a longitudinal dataset capturing repeated clinical assessments, APCOR has evolved into a formal clinical quality registry. It contains a curated version of the PCOC quality improvement dataset and includes standardised information on patient demographics, diagnoses, symptom burden, functional status, care settings, and outcomes. In addition to supporting national quality improvement efforts, APCOR provides a governed pathway for the release of data to approved external third parties, enabling ethically responsible research and analysis that advances palliative care knowledge and practice.	University of Wollongong - Palliative Care Outcomes Collaboration (PCOC)	NSW Population & Health Services Research Ethics Committee reference - 2024/ETH02262	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executive Reported to State/Territory health departments Reported in Annual Report Reported in other public reports	The PROMs are measuring the patient experience of pain, breathing problems, difficulty sleeping, appetite problems, nausea, bowel problems and fatigue. These symptoms are recognised as being the most experienced symptoms for palliative care patients. Symptom Assessment Score, and once version 4 of the PCOC data set is rolled out in late 2025, it will be the Edmonson Symptom Severity System.	Nil	Australia Capital Territory Canberra Health Services Canberra Hospital – Specialist Palliative Care Consult Clare Holland House New South Wales Nepean Blue Mountains Local Health District Nepean Hospital St John of God Health Care: Hawkesbury District Health Service Northern Sydney Local Health District Royal North Shore Hospital Ryde Hospital Hornsby Hospital Mona Vale Hospital Northern Beaches Hospital Manly Adolescent and Young Adult Hospice South Eastern Sydney Local Health District Calvary Health Care Kogarah Prince of Wales Hospital South Western Sydney Local Health District Bowral and District Hospital Camden Hospital (Macarthur Palliative Care Services), Fairfield Hospital Palliative Care Consult Liverpool Hospital Sydney Local Health District Canterbury Hospital Concord Hospital - Concord Centre for Palliative Care Royal Prince Alfred Hospital (RPA) Western Sydney Local Health District Auburn Hospital Supportive and Palliative Care Service Blacktown Hospital Mt Druitt Hospital Western Sydney LHD Community Palliative Care Westmead Hospital Central Coast Local Health District Gosford Hospital Wyong Hospital Hunter New England Local Health District John Hunter Hospital Maitland Dungog Community Palliative Care Service Manning Rural Referral Hospital Tamworth Base Hospital Tamworth/Nundle Community Health Service Mid North Coast Local Health District Bellinger River District Hospital Coffs Harbour Community Palliative Care Service Hastings Macleay Community Palliative Care Service Macksville Community Health Centre Wauchope District Memorial Hospital Western NSW Local Health District Bathurst Health Service Cowra Health Service Dubbo Health Service Lachlan Health Service - Forbes Hospital Lachlan Health Service - Parkes Hospital Mudgee Health Service Orange Health Service Far West Local Health District Broken Hill Health Service Buronga Specialist Palliative Care Service Illawarra Shoalhaven Local Health District Bulli Hospital David Berry Hospital Illawarra Shoalhaven Community Specialist Palliative Care Service Shellharbour Hospital Shoalhaven District Memorial Hospital Wollongong Hospital Murrumbidgee Local Health District Murrumbidgee LHD Palliative Care Service Southern NSW Local Health District Cooma Hospital Arcadia Pittwater Private Hospital Baringa Private Hospital Calvary Health Care Riverina Calvary Mater Newcastle Central Coast Specialist Palliative Care Services Chris O'Brien Lifehouse Forster Private Hospital HammondCare - Braeside Hospital HammondCare - Greenwich Hospital HammondCare - Neringah Hospital HammondCare Community Palliative Care (Incl. Northern Beaches community palliative care), Lourdes Hospital Mater Hospital, North Sydney Mercy Care Centre Young Mercy Health Service Albury Northern Sydney Home Nursing Service Port Kembla Hospital RACF Outreach Community Team Ramsay Health Glengarry Palliative Care Unit/Service RPA Virtual (Sydney District Nursing - Concord, Canterbury, Croydon, Marrickville and Redfern) Silverchain Western Sydney Southern NSW LHD Community Specialist Palliative Care (Goulburn, Eurobodalla, Queanbeyan, Comma & Bega) St Joseph's Hospital St Vincent's Hospital Sydney/ Sacred Heart Palliative Care Service St Vincent's Private Hospital, Lismore Sydney Adventist Hospital Toronto Private Hospital (Aurora Health) Wolper Jewish Hospital Wynnum-Manly PCU Northern Territory Alice Springs Community Hospice Central Australia Health Service Katherine Hospital Top End Palliative Care Service Queensland Cairns and Hinterland Hospital and Health Service (HHS) Cairns & Gordonvale Hospital Central Queensland Hospital and Health Service (HHS) Rockhampton Base Hospital Gladstone Hospital Darling Downs Hospital and Health Service (HHS) Toowoomba Hospice Toowoomba Hospital Palliative Care Service Gold Coast Hospital and Health Service (HHS) Gold Coast Hospital Robina Hospital Mackay Hospital and Health Service (HHS) Mackay Base Hospital Metro North Hospital and Health Service (HHS) Royal Brisbane and Women's Hospital Prince Charles Hospital Chermside Caboolture Hospital Redcliffe Hospital Palliative Care Service Metro South Hospital and Health Service (HHS) QEII Hospital Redland Community Team Metro South Community Palliative Care Service Sunshine Coast Hospital and Health Service (HHS) Sunshine Coast & Cooloola Palliative Care Caloundra Hospital Torres and Cape Hospital and Health Service (HHS) Townsville Hospital and Health Service (HHS) Townsville Hospital Townsville Palliative Care Centre West Moreton Hospital and Health Service (HHS) Ipswich Hospice Ipswich Hospital Ipswich Nursing Service Wide Bay Hospital and Health Service (HHS) Bundaberg Palliative Care Hervey Bay & Fraser Coast Maryborough Hospital Blue Care Canossa Private Hospital Cittamani Hospice Service Corinda South Brisbane Community Team Fraser Coast Hospice Hopewell Hospice Hospital in Your home Karuna Hospice Katie Rose Cottage Hospice Little Haven Palliative Care Inc Mater Private Brisbane Mater Private Mackay Mt Isa & Surrounds Palliative Care PARAS inpatients Bundaberg Hospital Silverchain Queensland St Vincent's Private Hospital Toowoomba St Vincent’s Hospital Brisbane The Mater Hospital Wesley Private South Australia Barossa Hills Fleurieu Local Health Network (LHN) South Coast Palliative Care Service Inner North Palliative Care Adelaide Hills Community Health Service, Eyre and Far North Local Health Network (LHN) Port Lincoln Palliative Care Service Flinders and Upper North Local Health Network (LHN) Port Augusta Palliative Care Service Whyalla Palliative Care Service Limestone Coast Local Health Network (LHN) Limestone Coast LHN Specialist Palliative Care Service Riverland Mallee Coorong Local Health Network (LHN) Riverland Palliative Care Service Southern Adelaide Local Health Network (LHN) Southern Adelaide Palliative Services Yorke and Northern Local Health Network (LHN) Lower North Palliative Care Service Port Pirie Regional Health Service Yorke Peninsula Palliative Care Calvary Community Care SA Calvary Health Care Adelaide (Mary Potter Hospice) Central Adelaide Palliative Service Enabling confidence at home community health service Northern Adelaide Palliative Service Royal District Nursing Service - South Australia Stirling District Hospital Tasmania Calvary Health Care - St Luke's Launceston Calvary Health Care Tasmania - St John's Mersey Community Hospital Palliative Care Service South Tasmania Tasmania Community North Tasmania Community North West Victoria Anam Cara Geelong Anam Cara House Colac Austin Health Palliative care Bacchus Marsh Community Palliative Care, Ballarat Hospice Care Banksia Palliative Care Barwon Health Palliative care Services Bellarine Community Health Benalla Home Nursing Service Bendigo Health Integrated PCS Cabrini Consult team Cabrini Health Calvary Bethlehem Caritas Christi Kew Colac Area Health - Community Palliative Care East Grampians Health Service Eastern Health Angliss Eastern Health Box Hill Eastern Health Consult Team Eastern Health Maroondah Eastern Health Palliative care Wantirna Eastern Health Palliative Residential Aged Care Consult service (PRACCS) Eastern Palliative Care Echuca Regional Health Fitzroy Hospice Gandarra Palliative Care Goulburn Valley Health Goulburn Valley Hospice Inc. Grampians Community Health Horsham Kyabram District Health Service Latrobe Regional Hospital Logan Community Team Lower Hume Palliative care service Community McCulloch House Supportive and Palliative Care Monash Health Melbourne City Mission Palliative Care Mercy Palliative Care Sunshine Moira Palliative Care Service Murray Mallee Northeast Health Wangaratta Palliative Care Northern Health Broadmeadows - McKenna House Palliative Care Northern Health Palliative Care Consult Team Palliative Aged Care Supportive Service (PACS) Palliative Ambulatory Care Consult Team - Eastern Health Palliative Care South East Peninsula Home Hospice Peter MacCallum Cancer Centre Peter MacCallum Cancer Centre Inpatient Unit Portland District Health - Community Palliative Care Royal Melbourne Hospital (Outlier data) Royal Melbourne Hospital Consult Royal Melbourne Hospital Palliative Care Unit South East Private Hospital South Metropolitan Area Palliative Consultancy South West Healthcare South West Hospital and Health Service St John of God- Berwick Hospital St John of God-Ballarat Hospital St John of God-Bendigo Hospital St John of God-Frankston St John of God Geelong St Vincent's Hospital Fitzroy St Vincent's Hospital Fitzroy Palliative Care Consult Sunraysia Community Health Service Sunshine Hospital Palliative Care Unit Swan Hill Palliative Care Service Tattersalls Peninsula Palliative Care The Alfred Hospital The Northern Hospital Werribee Mercy Hospital (Gabrielle Jenning Centre) Werribee Mercy Hospital PC Consult West Gippsland Community Palliative Care Service Western District Health Service Western Health – Community Wodonga Health Palliative Care Community Service Western Australia Albany Community Hospice, Bethesda Hospital Palliative Care Unit Bunbury Community Fiona Stanley Hospital Consult Service (including Fremantle Hospital), Geraldton Community (Midwest Regional) Kalamunda Districts Hospital/Armadale Hospital Metropolitan Palliative Care Consultancy Service (MPaCCS) Northam Palliative Care Ramsay Health Joondalup Palliative Care Service Ramsay Health Peel Palliative Care Service Rockingham General Hospital Specialist Palliative Care Consult Service Royal Perth Hospital Specialist Palliative Care Consult Service/inc. Bentley Hospital Silver Chain Community Specialist Palliative Care Service Silver Chain Hospice Care Service WA St John of God - Murdoch Community Hospice St John of God Bunbury St John of God Geraldton St John of God Joondalup St John of God Midland WACHS - Goldfields Regional Palliative Care Service WACHS - Great Southern Regional Palliative Care Service WACHS - Kimberley Regional Palliative Care Service WACHS - Midwest Regional Palliative Care Service WACHS - PalCATS - Palliative Care Telehealth Service WACHS - Pilbara Regional Palliative Care Service WACHS - South West Regional Palliative Care Service WACHS - Wheatbelt Regional Palliative Care Service
ACSQHC-ARCR-220	Clinical ophthalmology	Nil	Save Sight Registries	SSR	http://savesightregistries.org/	Professor Mark Gillies, Sydney Eye Hospital and the University of Sydney, ssi.ssr@sydney.edu.au	2010	The Save Sight Registries (SSR) System is a unique online platform designed to track and document real-world outcomes for the treatment of eye diseases through the collection, exchange and analysis of de-identified health data. The international SSR flagship project is the Fight Retinal Blindness! Registry, established in Australia in 2007. Through its research activities, SSR enables current and emerging therapies to be evaluated for patient safety, clinical efficacy and cost-effectiveness. Our reports are read by clinicians, researchers, policy makers, public health administrators and patient advocacy organisations seeking to improve health outcomes for patients with a range of eye conditions. In Australia, the SSR system has been successfully implemented in the private and public sector health care systems in all state and territories. Additionally, SSR has also expanded to other countries including New Zealand, Switzerland, Singapore, Belgium, France, Ireland, Italy, Spain, the Netherlands and the United Kingdom. The primary objectives of SSR are three-fold: to provide a secure, web-based platform for clinicians to document high-quality clinical data on patient treatments outcomes to generate clinician specific analytics and reports for self-auditing to improve patient care through the establishment of benchmark standards of care for specific ocular conditions that can be treated with available and emerging treatments. Patient population: Patients being treated for eye diseases including diabetic retinopathy, keratoconus, glaucoma, and ocular melanoma. Outcomes measured: Visual acuity and treatment burden are two key indicators for the assessment of the efficacy of treatment, therapies and surgical interventions.	University of Sydney	Royal Australian and New Zealand College of Ophthalmologists HREC: 16.09 (09/73), 49.14, 50.14,102.19 South Eastern Sydney Local Health District HREC: 13/037,14/024	Reported in other public reports Shared with clinicians Shared with consumers Commissioned reports and academic papers presented at scientific conferences and published in peer review journals FRB! system provides automated reports whereby doctors can ascertain their performance against the aggregated cohort, SSR does not provide feedback about treatment regimens to individual clinicians Impact of Vision Impairment (IVI) Questionnaire	Keratoconus Outcomes Research Questionnaire (KORQ) Glaucoma Activity Limitation Questionnaire Glaucoma Ocular Surface Disease Index Questionnaire	Nil	For the sake of privacy of participating clinicians, we cannot provide a comprehensive list of participating sites. However, hospitals include: Sydney Eye Hospital, Australia Universitats Spital Zurich, Switzerland ADHB Auckland Hospital, New Zealand CHU de Dijon, France Hospital Clínic de Barcelona, Spain Amphia Ziekenhuis, Breda, The Netherlands Royal Free London NHS Foundation Trust, UK Fondazione IRCCS CA'GRANDA - Ospedale Maggiore Policlinico, Italy Singapore National Eye Centre, Singapore
ACSQHC-ARCR-228	Hydrocephalus	Nil	Australasian Shunt Registry	Nil	https://nsa.org.au/NSA/Shunt_Registry/NSA/Shunt_Registry/About_the_Regi…">https://nsa.org.au/	Katrina Smith, Neurosurgical Society of Australasia,& nbsp;shunt.registry@nsa.org.au	2016	The primary purpose of the Shunt Registry is to systematically collect information related to the use of cerebrospinal (CSF) shunts to guide best clinical practices, processes and improve health outcomes for patients with CSF shunts. Any hospital throughout Australasia where cerebrospinal fluid (CSF) shunt surgery is performed is eligible to contribute data to the Shunt Registry & nbsp. Any patient undergoing a CSF shunt related procedure in an ethics approved site is eligible to contribute data to the Shunt Registry. There are no additional inclusion or exclusion criteria. The Shunt Registry key objectives are to: Enable determination of the current indications, frequency and outcomes of CSF shunt related procedures Enable measurement of CSF shunt longevity and device failure rates with benchmarking of CSF shunt component performance Enable early identification of particular CSF shunt components associated with unexpectedly high failure rates Measure the quality and safety of care to form benchmarking of outcomes between de- identified individuals and neurosurgical units in order to improve the quality of clinical care Mitigate risk by using Shunt Registry data to rebut any inaccurate information published about the safety of CSF shunts Provide an opportunity to study methods of improving the performance and outcomes of CSF shunts and their components through research projects Provide a central repository of potentially re-identifiable information to allow rapid provision of accurate information to the neurosurgeon if the need arises Provide the neurosurgeon access to device information if a patient has an emergency need for neurosurgical care.	Neurosurgical Society of Australasia	Sydney Children's Hospital Network HREC 16 196 - lead HREC for sites operating under NMA. All other sites have ethics approval as required.	Feedback to contributing clinicians	Nil	Nil	Australian Capital Territory National Capital Private Canberra Hospital New South Wales Children's Hospital at Westmead Royal Prince Alfred Hospital The Sydney Children's Hospital Randwick Nepean Hospital Macquarie University Hospital Prince of Wales Hospital St George Public Hospital Prince of Wales Private Hospital Sydney Adventist Hospital Concord Repatriation General Hospital John Hunter Hospital John Hunter Children's Hospital Liverpool Hospital Norwest Private North Shore Private Royal North Shore Hospital St Vincent's Public Hospital St Vincent's Private Hospital Westmead Hospital Westmead Private Hospital Wollongong Public Hospital Wollongong Private Hospital Queensland Queensland Children's Hospital Brisbane Private Hospital Royal Brisbane and Women's Hospital Mater Children's Private Hospital Mater Private Hospital Gold Coast University Hospital Townsville Hospital Mater Hospital Townsville Sunshine Coast University Hospital Greenslopes Private Hospital Pindara Private Hospital Princess Alexandra Hospital Wesley Private Hospital South Australia Calvary Wakefield Hospital Women and Children's Hospital Royal Adelaide Hospital Flinders Medical Centre Flinders Private Hospital Memorial Hospital Tasmania Royal Hobart Hospital Calvary Lenah Valley Hospital Victoria The Royal Children's Hospital Austin Hospital Melbourne Private Hospital Royal Melbourne Hospital Alfred Hospital Monash Health Monash Children's Hospital St Vincent's Hospital Cabrini Malvern Western Australia Hollywood Private Royal Perth Hospital Perth Children's Hospital Sir Charles Gairdner Hospital New Zealand Braemar Hospital Christchurch Hospital Mercy Hospital (Dunedin) Dunedin Hospital Waikato Hospital Auckland Hospital Wellington Hospital Starship Childrens Hospital
ACSQHC-ARCR-231	Elective spine surgery	Musculoskeletal disorders	Australian Spine Registry	ASR	https://www.spineregistry.org.au/	Esther Apos, Spine Society of Australia, esther.apos@monash.edu	2016	The ASR will tell us about: The frequency of spine surgery in our community; The usefulness, safety and results of different surgical approaches and different implantable devices; The factors that predict favourable and unfavourable surgical outcomes in both the short and longer term; The variety of care provided for people undergoing spine surgery in our community, and how it compares to best practice internationally. The aim of this project is to develop the pilot of a population-based spine surgery clinical registry to optimise quality of care provided to individuals undergoing spine surgery. The study population will include any person over the age of 18 undergoing elective surgery that involves the spine. Patient reported outcome measures (PROMs) specific to quality of life (The 3 Level EQ5D™)and pain and disability questionnaires are used (The Oswestry Disability Index (ODI) for low back pain and the Neck Disability Index (NDI) for acute or chronic disability of the neck).	Spine Society of Australia	Melbourne Health HREC Reference: HREC/16/MH/93	Feedback to contributing clinicians Reported in Annual Report Reported in other public reports Shared with consumers Shared with hospital executive Shared with medical colleges Shared with other clinicians Medical device companies & private health insurers	The Oswestry Disability Index (ODI) for low back pain and the Neck Disability Index (NDI) for acute or chronic disability of the neck. The 3 Level (EQ5D™) questionnaire is used to assess general quality of life.	Nil	New South Wales John Hunter Hospital Royal Newcastle Centre Lake Macquarie Private Hospital Macquarie University Hospital Nepean Private Hospital Newcastle Private Hospital Prince Of Wales Hospital Prince Of Wales Private Hospital St George Private Hospital Queensland Royal Brisbane and Women’s hospital Princess Alexandra Hospital Tasmania Calvary - Lenah Valley Hospital Victoria Epworth Eastern Hospital Epworth Richmond The Avenue, Melbourne Royal Melbourne Hospital - City Campus Warringal Private Hospital Western Australia St John Of God Hospital, Subiaco
ACSQHC-ARCR-233	Foot and Ankle conditions	Musculoskeletal disorders	Sydney Orthopaedic Foot and Ankle Research Institute Clinical Quality Registry	SOFARI	Nil	Corey Scholes, EBM Analytics, cscholes@ebma.com.au	2020	The SOFARI registry is the clinical registry for a collaborative group of foot and ankle surgeons in private practice. For this registry, clinical data is compiled alongside Patient Reported Outcome Measures (PROMs) for patients diagnosed with conditions of the foot and ankle. Clinical history, treatment characteristics, functional and patient-reported outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences).	Dr Andrew Wines, Sydney Orthopaedic Foot and Ankle Research Institute	St Vincent's Hospital HREC; 2020/ETH00615	Feedback to contributing clinicians Shared with other clinicians Reported in Annual Report Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis	Veterans RAND 12 item Health Survey (VR-12) Foot and Ankle Outcome Score (FAOS) MODEMs Satisfaction with Symptoms Pain Catastrophising Scale (PCS)	Nil	New South Wales Dubbo Clinics, Dubbo Campbelltown Specialist Clinic, Campbelltown Central West Orthopaedics & Sports Injuries, Westmead Chatswood Clinic, Chatswood Johnstone Street Medical Centre, Windsor Mater Clinic, Wollstonecraft North Sydney Orthopaedic and Sports Medicine Centre North Sydney Sports Medicine, St Leonards Northern Beaches Clinic, Frenchs Forest San Clinic, Wahroonga South West Sydney Orthopaedics, Liverpool Stadium Sports Medicine Clinic, Moore Park St George Private Hospital Specialist Consulting Suites, Kogarah Westmead Private Hospital Consulting Suites, Westmead
ACSQHC-ARCR-245	Orthopaedic conditions affecting the knee	Musculoskeletal disorders	Prospective Registry of Knee Pathology	PRoPath	Nil	Corey Scholes, EBM Analytics, cscholes@ebma.com.au	2019	PRoKPath is the clinical quality registry (self-reported) for privately consulting knee surgeon, Mr Tim Lording. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for knee conditions including osteoarthritis, rupture of the anterior cruciate ligaments, and conditions involving other structures of the knee joint. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice.	Mr Tim Lording, Melbourne Orthopaedic Group	Bellberry HREC 2020-01-048	Feedback to contributing clinicians Shared with other clinicians Reported in Annual Report Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis	Veterans RAND 12 item Health Survey (VR-12) Marx Activity Scale International Knee Documentation Committee Subjective Knee Evaluation Form (IKDC-Subjective) ACL Return to Sport Index (ACL-RSI) Knee Osteoarthritis Outcome Score (KOOS) 21-item,12-item, or joint replacement-specific scales (KOOS, KOOS-12, KOOS-JR) Tegner Activity Scale Musculoskeletal Outcomes Data Evaluation and Management System (MODEMS) Patient Expectation Scale MODEMS Symptom Satisfaction Single Assessment Numeric Evaluation score (SANE) Central Sensitisation Inventory Willingness to undergo procedure again (global assessment item)	Nil	Victoria Melbourne Orthopaedic Group, East Melbourne
ACSQHC-ARCR-246	Hip fracture	Musculoskeletal disorders	Australian and New Zealand Hip Fracture Registry	ANZHFR	www.anzhfr.org	Elizabeth Armstrong, Neuroscience Research Australia, e.armstrong@neura.edu.au	2015	The purpose of the ANZHFR is to use data to improve care and maximise outcomes for older people who have broken their hip. Public and private hospitals providing definitive treatment to people with a hip fracture are eligible to participate in the ANZHFR. People aged 50 years and over admitted to a participating Australian or New Zealand hospital are eligible for inclusion in the Registry. The ANZHFR evaluates hospital care against the ACSQHC Hip Fracture Care Clinical Care Standard to identify variation in key aspects of care and clinical outcomes. The Registry feeds the evaluation back to the health system, and the clinicians who work in the system, to inform clinical practice and decision making. The aim of the Registry is to improve the quality and safety of hip fracture with the objective of maximising a person’s survival and functional independence after hip fracture. The ANZHFR measures and reports against the quality statements and their indicators.	Neuroscience Research Australia	The Prince Charles Hospital HREC: HREC/14/QPCH/54 NSW Population and Health Services Research HREC: HREC/14/CIPHS/51 Monash HREC: HREC/16/MONH/65 HREC of Tasmania: 2014-043 Central Adelaide Local Health Network HREC: HREC/14/RAH/115 Sir Charles Gairdner and Osborne Park Health Care Group HREC: H0015534/H0017654	ANZHFR incorporates feedback via a real-time data dashboard and audit reports, which allows the data held by the Registry to be translated into meaningful reporting for clinicians, executive and local quality and safety staff. Meaningful reports can be generated onsite by registry users removing the need to request reports from the central Registry. The ANZHFR generates participating-site annual report and an Australian State and Territory report. These are publicly available via the website and shared with clinicians, hospital executive, state/territory/national health departments and authorities, as well as consumer and clinician stakeholder groups, on release. Individual hospitals opt-in to identified reporting and in 2020, 95% of hospitals have opted-in.	EQ5D5L optional collection at 120 days after admission	Nil	New South Wales Armidale Hospital Bankstown-Lidcombe Hospital Blacktown Hospital Bowral Hospital Campbelltown Hospital Coffs Harbour Hospital Concord Hospital Dubbo Hospital Gosford Hospital Grafton Base Hospital Hornsby Ku-ring-gai Hospital John Hunter Hospital Lismore Base Hospital Liverpool Hospital Nepean Hospital Orange Health Service Port Macquarie Hospital Prince of Wales Hospital Royal North Shore Hospital Royal Prince Alfred Hospital Ryde Hospital Shoalhaven Hospital St George Hospital St Vincent's Hospital Darlinghurst Sutherland Hospital Tweed Heads Hospital Wagga Wagga Hospital Westmead Hospital Wollongong Hospital Victoria Box Hill Hospital Dandenong Hospital Campus Footscray Hospital Frankston Hospital Geelong Hospital Maroondah Hospital Mt Gambier Hospital Sandringham Hospital St Vincent's Hospital Melbourne The Alfred Hospital The Austin Hospital The Northern Hospital Tasmania North West Regional Hospital Launceston Hospital Royal Hobart Hospital Queensland Cairns Hospital Gold Coast Hospital Hervey Bay Hospital Ipswich Hospital Logan Hospital Mackay base Hospital Mater Hospital, South Brisbane Nambour Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Redcliffe Hospital Robina Hospital Rockhampton Hospital Sunshine Coast University Hospital Tamworth Hospital The Prince Charles Hospital Toowoomba Hospital Townsville Hospital Wesley Hospital, Brisbane South Australia Flinders Medical Centre Lyell McEwin Hospital Queen Elizabeth Hospital The Royal Adelaide Hospital Western Australia Albany Hospital Fiona Stanley Hospital Joondalup Hospital Royal Perth Hospital Sir Charles Gairdner Hospital
ACSQHC-ARCR-247	Congenital Heart Disease	Nil	Australia and New Zealand Congenital Outcomes Registry for Surgery	ANZCORS	Nil	Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au	2020	A benchmarking registry for outcomes of paediatric cardiac surgery for Australia and New Zealand	Queensland Health	Children’s Health Queensland Hospital and Health Service HREC /2019/QCHQ/49534	Feedback to contributing clinicians Reported in Annual Report Shared with consumers Shared with hospital executive Shared with other clinicians	Nil	Nil	New South Wales The Children's Hospital - Westmead Queensland Queensland Children's Hospital Victoria The Royal Children’s Hospital Western Australia Perth Children’s Hospital New Zealand Starship Children's Hospital, Auckland
ACSQHC-ARCR-248	Dementia, Mild Cognitive Impairment	Dementia	Australian Dementia Network Registry	ADNeT Registry	https://www.australiandementianetwork.org.au	Kasey Wallis, Monash University, adnet.registry@monash.edu	2020	The Australian Dementia Network (ADNeT) Registry is a Clinical Quality Registry (CQR) (self-reported) for people diagnosed with either dementia or mild cognitive impairment (MCI). The aims of the registry are to: Collect and analyse data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or MCI in Australia Facilitate the recruitment of participants into research projects. Eligible patients are identified and recruited initially from specialist services (e.g. memory clinics) and individual medical specialists (e.g. geriatricians and neurologists) involved in the diagnosis of dementia. Data is collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. The ADNeT Registry has been developed and implemented to comply with the national operating principles for CQRs and is governed by the ADNeT Registry Steering Committee. The ADNeT Registry is part of Australian Dementia Network (ADNeT), a multi-institutional, Australia-wide consortium of dementia researchers and clinicians. The network was initially funded by the Boosting Dementia Research Initiative grant from the National Health and Medical Research Council’s National Institute for Dementia Research and philanthropic organisations. ADNeT received additional funding from the Department of Health and Aged Care for fiscal years 2024 to 2025. From 1 July 2023, the ADNeT Registry is also supported by funding from the Australian Government, Department of Health and Aged Care, under the National Clinical Quality Registry Program.	Monash University	Alfred Hospital HREC - Project 44037 (Local reference: 424/18)	Reported in Annual Report Reported in other public reports Shared with clinicians Shared with consumers Shared with hospital executive Shared with medical colleges Conference presentations, publication in peer-reviewed journals	The ADNeT Registry baseline participant and carer surveys included two patient/carer-reported outcome measure questions. The two questions were developed based on quality of life questions used in earlier studies. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021.	The ADNeT Registry baseline participant and carer surveys include nine patient/carer-reported experience measure questions. Seven of these questions were developed based on experience questions used in earlier studies, and the remaining two were developed by the ADNeT Registry Survey Working Group. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021.	New South Wales Burwood Specialists Calvary Cognition Clinic, Calvary Health Care Kogarah Central Coast Neurosciences (CCN) - Procognition Clinic Dementia Behaviour Assessment Management Service (DBAMS), Wagga Wagga Base Hospital Dr Margaret Beazley, Geriatrician, practising at Geriatric Specialist Care Dr Mark Hohenberg, Brellah Medical Group Geriatric Medicine Services, Western NSW LHD Hornsby Ku-ring-gai Memory Clinic, Hornsby Ku-ring-gai Hospital Integrated Specialist Medical Care Memory Assessment Program, Pottsville Murrumbidgee Local Health District Aged Care Outpatient Clinic, Wagga Wagga Base Hospital Northern Beaches Geriatricians Prince of Wales Hospital Brodaty Clinic Prince of Wales Hospital Cognitive Disorders Clinic Prince of Wales Hospital Neuropsychiatry Clinic Professor Caplan's General Geriatric Clinic, Prince of Wales Hospital Rehabilitation and Aged Care (RACS) Outpatient Clinic, Mona Vale Hospital Royal North Shore Memory Clinic, Royal North Shore Hospital Shoalhaven Aged Care Service, Milton Hospital Shoalhaven Aged Care Service, Shoalhaven Hospital Southcare Geriatricians, Sutherland Hospital Northern Territory Top End Memory Service Queensland Age Awareness (Memory) Clinic, Townsville University Hospital Agenda Health Beach Brain Cairns Memory Clinic, Cairns Hospital Dementia Assessment Service, Kirwan Health Dr John Endacott, Geriatrician at Eden Hospital Dr Logan, Geriatrician practising at Lakelands Medical Centre Geriatric, Adult Rehabilitation and Stroke Services (GARSS) Memory Clinic Healthy Ageing Gold Coast Innisfail Memory Clinic, Innisfail Hospital Ipswich Health Plaza Memory and Geriatric Clinics, Ipswich Hospital LifeSpan Specialists Mareeba Memory Clinic, Mareeba Hospital Memory Clinic Princess Alexandra Hospital, Princess Alexandra Hospital Memory Clinic Surgical, Treatment and Rehabilitation Services (STARS) Neurosciences Queensland Princess Alexandra Hospital Geriatric Clinic Redcliffe Hospital Memory Clinic, Redcliffe Hospital Robert Adam Neurology Robina Private Hospital - Memory Clinic, Robina Private Hospital The Prince Charles Hospital Memory Clinic, The Prince Charles Hospital Your Brain in Mind South Australia Acacia-Fiori Geriatrics Central Adelaide Local Health Network Department of Geriatrics and Rehabilitation Medicine Cognitive Neurology Clinic, Flinders Medical Centre Dr Boundy Private Clinic Flinders Medical Centre Memory and Aged Care Clinics Murray Bridge Soldiers' Memorial Hospital Geriatric Services QE Specialist Centre, Prof R Visvanathan Riverland General Hospital Geriatric Services Royal Adelaide Hospital Memory Service Sensus Cognition Specialist Ambulatory Rehabilitation Centre (SpARC) Memory Clinic The Queen Elizabeth Hospital Memory Service Tasmania David Dunbabin Aged Care Dr Krishna Kalpurath, Calvary Healthcare Sessional Rooms, Launceston Hazel Bucher Nurse Practitioner Consultancy The ISLAND clinic Victoria Associate Professor Steve Macfarlane, old age psychiatrist practising at Warrigal House Austin Cognitive Dementia and Memory Service (CDAMS), Heidelberg Repatriation Hospital Barwon Health Cognitive Dementia and Memory Service (CDAMS), McKellar Centre Bass Coast Health Geriatric Medicine Clinic Caulfield Cognitive Decline and Memory Service (CDAMS), Caulfield Hospital Central Geriatrician Associates Dr Jagadeesh Herur, Glencairn Private Consulting Suites Dr Jagadeesh Herur, Harvester Private Consulting Suites Eastern Cognitive Disorders Clinic Eastern Health Cognitive Dementia and Memory Service (CDAMS), Wantirna Health Echuca Regional Health Cognitive, Dementia and Memory Service (CDAMS) Goulburn Valley Health Cognitive Dementia and Memory Service (CDAMS) Grampians Cognitive Dementia & Service Clinic (CDAMS), Ballarat Health Service Irene Wagner’s Clinic Kingston Cognitive Dementia and Memory Service (CDAMS), Monash Health Prof Dennis Velakoulis, Church Street Consulting Suites, The Melbourne Clinic Royal Melbourne Hospital Cognitive Dementia and Memory Service (CDAMS), Royal Park Royal Melbourne Hospital Neuropsychiatry Clinic, Royal Melbourne Hospital St Vincent’s Hospital Melbourne Cognitive Dementia and Memory Service (CDAMS) St Vincent's Hospital Melbourne Geriatric Medical Clinic Western Health Cognitive Dementia and Memory Service (CDAMS), Footscray Hospital Western Australia Dr Roger Clarnette, Geriatrician practising at Hollywood Specialist Centre Fremantle Hospital Comprehensive Care Centre
ACSQHC-ARCR-254	Pancreatic Cancer	Nil	Upper Gastrointestinal Cancer Registry (UGICR) – Pancreatic Module	UGICR – Pancreatic Module	https://ugicr.org.au	Ms Elysia Greenhill, Monash University, ugicr@monash.edu	2015	The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The pancreatic module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the pancreas, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.	Monash University	Monash Health HREC: Reference HREC/15/MonH/134 Aboriginal Health and Medical Research Council of New South Wales HREC: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611	Reported in Annual Report Shared with clinicians Shared with hospital executive	European Organization for Research and Treatment Quality of Life Questionnaire (EORTC QLQ) - C30 (EORTC QLQ-C30) EORTC QLQ - PAN26	European Organization for Research and Treatment Quality of Life Questionnaire (EORTC QLQ) - C30 (EORTC QLQ-C30) EORTC QLQ - PAN26	New South Wales Bankstown-Lidcombe Hospital Calvary Mater Newcastle Campbelltown Hospital Chris O’Brien Lifehouse John Hunter Hospital Liverpool Hospital Prince of Wales Hospital Prince of Wales Hospital – Private Royal North Shore Hospital Royal Prince Alfred Hospital Royal Prince Alfred Hospital – Private Victoria Albury Wodonga Health Alfred Health Austin Health Ballarat Health Services Bendigo Health Cabrini Health Eastern Health Epworth Health Care Frankston Private Goulburn Valley Health Jessie McPherson Private Hospital Latrobe Regional Hospital Monash Health Northern Health Peninsula Health Peter MacCallum Cancer Centre Ramsay – Warringal Private Hospital Royal Melbourne Hospital St Vincent’s Hospital Melbourne St Vincent’s Private Hospital Melbourne Warringal Private Hospital Western Health
ACSQHC-ARCR-258	Degenerative Cervical Myelopathy	Nil	The Myelopathy Natural History Australian Degenerative Cervical Myelopathy Registry	The MYNAH Registry	Nil	Dr Ashish D Diwan, University of New South Wales (UNSW), Sydney, a.diwan@unsw.edu.au	2023	Degenerative cervical Myelopathy (DCM) is the commonest cause of spinal cord dysfunction worldwide. Clinical features include localised neck pain, impairment of motor functions in the upper and lower limbs, loss of bladder function that can eventually lead to paralysis and even death if treatment is not sought. Although surgical decompression of the spinal cord remains the mainstay of treatment, very few patients achieve complete recovery, and the majority of patients are left with life-long disability. Due to lack of a diagnostic criteria and many mimicking conditions, DCM is widely underdiagnosed and hence its true incidence and prevalence remains unknown. The MYNAH (MYelopathy NAtural History) registry is a multi-centre, prospective, observational cohort study enrolling patients with Degenerative Cervical Myelopathy (DCM) across Australia. MYNAH Registry is the world's first registry to understand the natural history of DCM in a systematic manner. The purpose is to determine the natural history of DCM, to describe the influence of age, gender, smoking and BMI on outcome of DCM, to describe the demographics, comorbidities, genetic predisposition, disease severity and prognosis of DCM and to compare the outcomes between the operative and non-operative cases of DCM. Patients with a diagnosis of DCM by a spine surgeon or neurosurgeon from various participating clinical sites are included in the registry. The outcome measures are Neck Disability Index (NDI), modified Japanese Orthopaedic Association Score (mJOA), EQ-5D-5L questionnaire and Nurick grade. Follow-up for all participants is conducted biannually, which includes completion of mJOA score, Nurick grade and clinical examination at their respective study site and completion of NDI and EQ-5D-5L questionnaires.	Spine Service, St George Hospital, SESLHD, University of New South Wales (UNSW), Sydney	University of New South Wales (UNSW), Sydney HREC reference number: HC2207011	Shared with other clinicians	Neck Disability Index (NDI) modified Japanese Orthopaedic Association (mJOA) Score Nurick Grade EuroQol Group EQ-5D-5L	Nil	New South Wales St George Hospital St George Private Hospital Private practices of: Dr Ashish Diwan Dr Prashant Rao Dr Mark Davies Dr Brian Hsu Dr Mitchell Hansen Dr Ali Ghahreman Dr Saeed Kohan Recruiting further sites on ongoing basis
ACSQHC-ARCR-262	Prostate cancer	High burden cancers	NSW Prostate Clinical Cancer Registry	PCCR	https://www.cancer.nsw.gov.au/research-and-data/cancer-data-and-statistics/nsw-prostate-clinical-cancer-registry	Serina Teuss, Cancer Institute NSW, Serina.Teuss@health.nsw.gov.au	2015	The PCCR captures diagnosis, treatment, quality of life and mortality data for men diagnosed with prostate from 1 January 2015 onwards. Only men who have been diagnosed or treated by a participating clinician and hospital across NSW are eligible for recruitment into the registry. The data collected measures the quality of care and provides feedback to consumers and health professionals about the management of prostate cancer in the state.	Cancer Institute NSW	Cancer Institute NSW HREC reference: 2015/02/578	Reported in Annual Report Shared with clinicians Shared with hospital executive	The Expanded Prostate Cancer Index Composite (EPIC-26) Short Form - a quality of life questionnaire	Nil	https://www.cancer.nsw.gov.au/research-and-data/cancer-data-and-statist… New South Wales Armidale Hospital Bankstown-Lidcombe Hospital Bathurst Base Hospital Belmont Hospital Blacktown Hospital Calvary Mater Hospital Campbelltown Hospital Chris O’Brien Lifehouse Cobar District Hospital Coffs Harbour Health Campus Coonabarabran District Hospital Dubbo Hospital Garvan Institute of Medical Research Gosford Hospital Grafton Base Hospital Griffith Hospital John Hunter Hospital (Royal Newcastle Centre) Lismore Hospital Liverpool Hospital Macquarie University Hospital Maitland Hospital Manning Rural Referral Hospital Mudgee District Hospital Nepean Hospital Orange Hospital Port Macquarie Base Hospital Prince of Wales Hospital Riverina Cancer Care Centre Royal Prince Alfred Hospital Royal North Shore Hospital Shoalhaven District Memorial Hospital St George Hospital St Vincent’s Private Hospital St Vincent’s Public Hospital Sydney Adventist Hospital Tamworth Hospital The St Vincent's Prostate Cancer Centre (St Vincent's Clinic) Wagga Wagga Base Hospital Walgett Health Service Westmead Hospital Wollongong Hospital Wyong Hospital Young Hospital
ACSQHC-ARCR-263	Genetic disorders of haemoglobin (haemoglobinopathies)	Nil	Haemoglobinopathy Registry	HbR	https://www.monash.edu/medicine/sphpm/registries/hbr	Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu	2014	The Haemoglobinopathy Registry collects data about patients with genetic disorders of haemoglobin (haemoglobinopathies), including thalassaemias and sickle cell disease. Many of these patients are dependent on regular blood transfusions and the disorders can have significant personal and economic impact. Lack of data on the prevalence of haemoglobinopathies and the overall disease burden in Australia makes comparisons of interventions and audits of outcomes between centres nationally and with international centres, difficult. The Haemoglobinopathy Registry will address this lack of data, and will provide a foundation for future research. The aims of the Haemoglobinopathy Registry are to: monitor trends in incidence and survival monitor access to care explore variation in practice, process and outcome measures explore the factors that influence outcomes including survival and quality of life benchmark outcomes nationally and internationally act as a resource for clinical trials inform and inspire future hypothesis - driven research in this area	Monash University	HREC/16/MonH/156, Monash Health HREC	Reporting via research publications only	Nil	Nil	New South Wales The Children's Hospital at Westmead John Hunter Children's Hospital Liverpool Hospital Prince of Wales Hospital Royal Prince Alfred Hospital Queensland Mater Adult Hospital Queensland Children's Hospital South Australia Royal Adelaide Hospital Women's and Children's Hospital Victoria Monash Medical Centre Royal Children's Hospital Royal Melbourne Hospital Western Australia Perth Children's Hospital
ACSQHC-ARCR-268	Burn Injuries	Major burns	NSW Statewide Burn Injury Service Registry	SBIS registry	https://aci.health.nsw.gov.au/networks/burn-injury/resources	Anne Darton, NSW Health - Agency for Clinical Innovation, anne.darton@health.nsw.gov.au	2004	The SBIS Registry has been established to provide a comprehensive registry of severe burn injuries treated at the three NSW Burns Units: the Children’s Hospital at Westmead, Royal North Shore Hospital and Concord Repatriation General Hospital. Burns patients represent a well defined and distinct subgroup of trauma patients in NSW. Extensive burns are associated with substantial treatment and rehabilitation costs, and many result in permanent disability, highlighting the need to monitor the incidence, management and outcomes of burn injury. The data collected enables the registry to meet its aims of monitoring, surveillance and clinical evaluation and is critical for: Improving service planning for burns patients in NSW Informing the development of injury prevention campaigns and strategies Developing best practice clinical guidelines and initiatives Developing key clinical indicators at a state level Monitoring quality and types of care provided to burns patients Allowing the generation of reports used in monthly, quarterly and annual audits for the burns service.	NSW Agency for Clinical Innovation Statewide Burn Injury Service	Cancer Institute NSW reference: 2015/02/578	Shared with clinicians Shared with consumers Shared with hospital executive	Nil	Nil	Concord Repatriation Hospital Royal North Shore Hospital The Children’s Hospital at Westmead
ACSQHC-ARCR-269	Cardiac procedures and devices	Ischemic heart disease	Victorian Cardiac Outcomes Registry	VCOR	http://vcor.org.au/	Angela Brennan, Monash University, angela.brennan@monash.edu	2013	The VCOR is a Clinical Quality Registry collecting data on selecting cardiac procedures such as percutaneous coronary intervention (PCI). VCORs mandate is to undertake analyses of collective hospital data to produce meaningful reports for hospitals based on clinically relevant quality indicators. For PCI this allows hospitals to benchmark themselves and assess their performance on a quarterly and annual basis, with all hospitals who undertake PCI in the state of Victoria contributing all cases. Selected hospitals contribute to the data collection for cardiac implantable electronic devices (CIED's), with 6 monthly annual reports provided. VCORs aims include: Benchmarking outcomes to stimulate improvement in patient care Identifying areas of excellence as well as opportunities for improvement across the entire system of care Providing an impetus for maximising performance Applying relevant, emerging best practice principles and share knowledge Accounting for individual and cohort-related risk factors when assessing outcomes Providing insight into the medium and long-term safety of cardiac devices, treatments and procedures Identifying geographical or socioeconomic disparity in care. The outcomes measured and reported for PIC include: In-hospital and 30-day Mortality In-hospital and 30-day Unplanned revascularisation In-house Major Bleeding 30-day Major Adverse Cardiac and Cerebrovascular Events Risk Adjusted 30 Day Mortality (reported annually) Door To Balloon Time (for Primary PCI STEMI cases) Length of hospital stay VCOR undertakes a rigorous, independent audit program for PCI.	Monash University	47/12 Victorian Cardiac Outcomes Registry, The Alfred Hospital HREC. All hospitals have HREC approval.	Feedback to contributing clinicians (via annual report & access to online reports) Shared with clinicians Reported in Annual Report Reported in other public reports Shared with consumers Shared with hospital executive Shared with medical colleges Reported to State/Territory health departments	Nil	Nil	https://vcor.org.au/participating-sites Percutaneous Coronary Intervention Hospital Alfred Hospital Austin Hospital Ballarat Base Hospital Bendigo Hospital Box Hill Hospital Cabrini Hospital Malvern Epworth Hospital Eastern Epworth Hospital Geelong Epworth Hospital Richmond Footscray Hospital Frankston Hospital Holmesglen Private Hospital Jessie McPherson Private Hospital Knox Private Hospital Melbourne Private Hospital Monash Heart (Monash Health) Northern Hospital Peninsula Private Hospital Royal Melbourne Hospital St John of God Ballarat Hospital St John of God Bendigo Hospital St John of God Geelong Hospital St Vincent's Private Hospital St Vincent's Hospital (Melb) Sunshine Hospital The Valley Private Hospital University Hospital, Geelong Warringal Private Hospital Western Private Hospital Regional STEMI Hospital Albury Wodonga Health (Albury Campus) Albury Wodonga Health (Wodonga Campus) Bendig Hospital Central Gippsland Health Service (Sale) Latrobe Regional Hospital (Traralgon) Mildura Base Hospital Northeast Health (Wangaratta) West Gippsland Health Care Group (Warragul) Wimmera Base Hospital (Horsham) Heart Failure Hospital Alfred Hospital Austin Hospital Bairnsdale Regional Health Service Bendigo Hospital Box Hill Hospital Central Gippsland Health Service (Sale) Dandenong Hospital (Monash Health) Epworth Hospital Richmond Footscray Hospital Frankston Hospital MonashHeart (Monash Health) Northern Hospital Royal Melbourne Hospital St Vincent's Hospital (Melb) Sunshine Hospital University Hospital, Geelong
ACSQHC-ARCR-270	Severe asthma	Nil	Australian Severe Asthma Dupilumab Registry	ASADR	https://thoracic.org.au/research-and-awards/australasian-severe-asthma-registry-asar/	Li Ping Chung, Clinical Lead, WA Respiratory Health Network, Department of Health; Li.Chung@health.wa.gov.au	2023	The Australasian Severe Asthma Dupilumab Registry (ASADR) is a treatment-specific registry attached to the larger Australasian Severe Asthma Registry (ASAR). The ASAR is a large registry which monitors the health and wellbeing of people in Australia and New Zealand who have uncontrolled or severe asthma. As dupilumab is now available on the PBS in Australia, the ASADR is an Australian module attached to ASAR. The purpose of the ASADR is to specifically monitor the health and wellbeing of people with asthma who are receiving dupilumab for the treatment of their severe asthma in Australia. The ASADR will be used to observe benefits and side effects of dupilumab, and to help researchers and clinicians better understand the use of dupilumab treatment in severe asthma. It will also contribute to the greater understanding of treatment options for the severe asthma population.	The Thoracic Society of Australia and New Zealand (TSANZ)	Hunter New England Local Health District HREC reference 2022/ETH02269	Feedback to contributing clinicians Shared with other clinicians Shared with medical colleges Reported in Annual Report	Asthma Control Questionnaire – 5 (ACQ-5) Asthma Quality of Life Questionnaire (AQLQ) Work productivity and activity impairment questionnaire for patients with asthma (WPAI-asthma) Global Rating of Change (GRoC)	Nil	New South Wales Campbelltown Hospital Concord Repatriation Hospital John Hunter Hospital Royal Newcastle Centre Liverpool Hospital Westmead Hospital Queensland Mater Private Hospital (South Brisbane) Princess Alexandra Hospital South Australia Royal Adelaide Hospital - Hampstead Rehabilitation Centre Western Australia Fiona Stanley Hospital Victoria Austin Health - Austin Hospital Box Hill Hospital The Alfred
ACSQHC-ARCR-278	Emergency Medicine Clinical Care	Nil	The Tasmanian Emergency Care Outcomes Registry	TECOR	https://www.taser.institute/tecor	Viet Tran, Royal Hobart Hospital, v.tran@utas.edu.au	2024	The Tasmanian Emergency Care Outcomes Registry is a clinical quality registry (self-reported) that aims to monitor the quality of clinical care provided by Tasmanian Emergency Departments. The primary objective for determining the quality of clinical care is by measuring 30-day mortality and safety event data (morbidity).	Department of Health, Tasmania	Ethics reference: HREA30260, University of Tasmania Human Research Ethics Committee	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executive Shared with consumers Shared with medical colleges Reported to State/Territory health departments Reported in Annual Report	Nil	Nil	Tasmania Launceston General Hospital Mersey Community Hospital North West Regional Hospital Royal Hobart Hospital
ACSQHC-ARCR-279	Eating Disorders	Mental Health	Australia and New Zealand Clinical Quality Registry for the Treatment of Eating Disorders	TrEAT Registry	https://www.uts.edu.au/about/faculties/health/faculty-health-research/treat-registry	Deborah Mitchison, University of Technology Sydney, deborah.mitchison@uts.edu.au	2016	The Australia and New Zealand Clinical Quality Registry for the Treatment of Eating Disorders (TrEAT Registry) supports clinical outcomes monitoring and reporting for people receiving eating disorders treatment. Participating services including private and public outpatient, day program, and residential eating disorder treatment centres in Australia and New Zealand. Clients at these services complete patient reported outcome measures before and throughout treatment. A feedback mechanism is employed whereby summaries of scores with norming data are sent immediately to clinicians to guide clinical decision-making. Service-wide reports are generated and benchmarked against the pooled registry data across services. Researchers use the registry to answer questions about eating disorder phenomenology and treatment. The TrEAT Registry captures clients aged 13 years and older, and all participating clients/caregivers provide informed consent for the use of their data to be included in the database for auditing and research purposes.	University of Technology Sydney	Ethics approved under the Hunter New England Local Health District Human Research Ethics Committee (2024/ETH02330) Ratified under University of Technology Sydney Human Research Ethics Committee (ETH25-11008)	Feedback to contributing clinicians Reported in Annual Report Quality assurance reports are provided to the executive of each listed clinic regularly, and benchmarked against pooled registry data. Funded research evaluations of treatment programs using the registry involve more comprehensive mixed methods analysis and reports to services, funders and governments.	Core Set (Eating Disorder Examination Questionnaire; Clinical Impairment Assessment; Depression Anxiety and Stress Scale) Additional PROMs included as requested by individual services or to support research.	Measures are currently under co-review with clients and clinicians, and are expected to include a measure of treatment satisfaction.	New South Wales Appetite for Change, Crows Nest Basten & Associates Clinical Psychologists, Westmead; Basten & Associates Clinical Psychologists, Chatswood Deborah Etienne-Ward Clinical Psychology, Gordon EveryBody Psychology & Wellbeing, Bondi Junction NSW Residential Eating Disorder Service, Newcastle Ramsay Northside Clinic, St Leonards Re-Centre at Waratah Private Hospital, Kogarah Queensland Collective Health Co, Forest Glen Wandi Nerida Residential Eating Disorder Program, Mooloolah Valley Victoria Ngamai Wilam Residential Eating Disorder Centre, Armadale Western Australia The Richardson Group, West Perth Australia - Wide Butterfly Foundation Next Steps virtual day program (national). New Zealand Nurture Psychology, Auckland, Christchurch and Wellington
ACSQHC-ARCR-284	Biliary System Cancer	Nil	Upper Gastrointestinal Cancer Registry – Biliary Module	UGICR – Biliary Module	https://ugicr.org.au/	Elysia Greenhill, Monash University, ugicr@monash.edu	2015	The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The biliary module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the bile ducts or gallbladder, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.	Monash University	National Mutual Acceptance, Monash Health HREC: Reference 15482A Aboriginal Health and Medical Research Council of New South Wales: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611	Reported in Annual Report Shared with clinicians Shared with hospital executive	PROMs is a future endeavour of this module.	PREMs is a future endeavour of this module.	Victoria Albury Wodonga Health Alfred Health Austin Health Ballarat Health Services Bendigo Health Cabrini Health Eastern Health Epworth Health Care Frankston Private Goulburn Valley Health Jessie McPherson Private Hospital Latrobe Regional Hospital Monash Health Northern Health Peninsula Health Peter MacCallum Cancer Centre Ramsay – Warringal Private Hospital Royal Melbourne Hospital St Vincent’s Hospital Melbourne St Vincent’s Private Hospital Melbourne Warringal Private Hospital Western Health
ACSQHC-ARCR-287	Upper limb orthopaedic conditions	Musculoskeletal disorders	Patient-Reported outcomes of Upper Limb Orthopaedic disorders registry	PRULO	Nil	Kevin Eng, Geelong Orthopaedics, kevineng@geelongortho.com.au	2020	The PRULO registry is the clinical registry for a collaborative group of upper limb orthopaedic surgeons consulting privately out of Geelong Orthopaedics, Victoria. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for upper limb conditions including osteoarthritis of the shoulder, and rotator cuff tear. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice.	Geelong Orthopaedics	Barwon Health HREC ref 19_70	Feedback to contributing clinicians Shared with other clinicians Reported in Annual Report Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis	EuroQol 5-Dimension, 5 Level (EQ-5D-5L) quality of life questionnaire Quick Disabilities of the Arm, Shoulder and Hand questionnaire (Quick DASH) Western Ontario Rotator Cuff (WORC) Score Oxford Shoulder Instability Score (OSIS) MODEMs Patient Expectation Scale Treatment satisfaction	Nil	Victoria Geelong Orthopaedics
ACSQHC-ARCR-288	Diabetes	Diabetes	Australian National Diabetes Audit Longitudinal Register	ANDA-L	https://www.monash.edu/medicine/anda/home	Sophia Zoungas, School of Public Health and Preventive Medicine, Monash University, sophia.zoungas@monash.edu	2019	The Australian National Diabetes Audit Longitudinal Register (ANDA–L) is a sub-study of the Australian National Diabetes Audit (ANDA) with its main focus to prospectively follow up the same cohort of patients over a 2 - 4 year period during the ANDA-AQCA (Australian Quality Clinical Audit) data collection. The data collected are clinical indicators known to have impact on the care of people with diabetes. ANDA-L aims to: Measure and report on longitudinal trends in the characteristics, type of care and major clinical outcomes (including survival) of a cohort of patients with diabetes attending diabetes services nationwide, with all data aggregated at a national level Evaluate longitudinal associations between patient characteristics, quality of care and major clinical outcomes (including survival). This allows participating centres to observe changes in clinical indicators for people with diabetes at both a group and individual level and offers a rich source of understanding of treatments, and clinical outcomes for people with diabetes. ANDA-L will provide longitudinal descriptive reporting to treating centres for quality management.	Monash University	Monash Health HREC/48547/MonH-2019	Shared with clinicians Shared with hospital executive ANDA-L provides longitudinal descriptive reporting to treating participating centres for quality management.	Nil	Nil	New South Wales Greater Newcastle Sector Diabetes Service Liverpool Hospital Murrumbidgee Local Health District Queensland Cairns Diabetes Centre Redland Hospital Victoria Barwon Health - Geelong Hospital Campus Cobram District Health Dandenong Hospital Gateway Health-Wangaratta Gateway Health-Wodonga Goulburn Valley Health - Shepparton Campus Kyabram & District Health Services Monash Medical Centre - Clayton Campus Numurkah District Health Service Royal Melbourne Hospital - City Campus St Vincent's Public Hospital-Melbourne
ACSQHC-ARCR-290	Hip and Knee Arthritis requiring Joint Replacement Surgery	Musculoskeletal disorders	Perth Hip and Knee Research Registry	PHKRR	www.hipnknee.com.au	Beth Tippett, Perth Hip and Knee Clinic, Subiaco WA, beth@hipnknee.com.au	2017	The Perth Hip and Knee Research Registry is designed to prospectively capture data to allow comparisons in techniques of undertaking hip and knee arthroplasty (joint replacement) surgery. This will look at methods of performing the surgery including the use of advanced technology and robotics as well as methods of individualising position of implants during surgery. All patients undergoing hip or knee replacement surgery at Perth Hip and Knee Clinic will be eligible for inclusion. Patient demographics, intra-operative measurements and data, post-operative patient reported outcome measures, clinical assessment and patient satisfaction will be measured as will radiographic analysis undertaken as routine of care.	Perth Hip and Knee Clinic	St John of God Health Care HREC ref1388	Feedback to contributing clinicians Shared with other clinicians Publication in peer reviewed journals	Forgotten Joint Score - 12 (FJS-12) Oxford Knee Score (OKS) Knee injury and Osteoarthritis Outcome Score, Joint Replacement (KOOS Jr) EuroQol Group (EQ-5d) Visual Analog scale (VAS) Pain scores Oxford Hip Score (OHS) Hip disability and Osteoarthritis Outcome Score, Joint Replacement (HOOS-JR)	Patient satisfaction following joint replacement surgery	Western Australia St John Of God Hospital, Murdoch St John Of God Hospital, Subiaco St John Of God Midland Public & Private Hospital
ACSQHC-ARCR-291	Haematological malignancy	High burden cancers	Australasian Leukaemia and Lymphoma Group National Blood Cancer Registry	ALLG NBCR	www.allg.org.au	Australasian Leukaemia & Lymphoma Group info@allg.org.au	2012	The ALLG NBCR is a national registry collecting clinically annotated data and biospecimens from a patient with a haematological malignancy with a focus on AML, ALL, UL and MDS. Treatment and clinical outcome data are collected for patients and the Australasian haematology community of ALLG members utilise data to inform practice, consider clinical trial inclusion, and to conduct research.	Australasian Leukaemia & Lymphoma Group	All participating sites are approved by a nominated HREC and their institutional research governance office. A Clinical Trial Research Agreement is also executed between the ALLG and each participating site. 1. Alfred Hospital HREC - Ref # 181/12 2. Canberra Hospital HREC - Ref # 3/13/049 3. Royal Darwin Hospital - Menzies School of Health Research Ref # HoMER13-1985 4. Royal Hobart Hospital HREC Tasmania Network Ref # HH0012836 5. Launceston Hospital HREC Tasmania Network Ref # HH0016511 6. The Queen Elizabeth Hospital HREC – Ref # HREC/12/TQEHLMH/35 7. Sir Charles Gairdner Hospital HRECRMH HREC – Ref # RGS0000001649 8. Royal Melbourne Hospital -Melbourne Health HREC – Ref # HREC/12/MH/106 9. Northern B Health and Disability Ethics Committee (NZ) – Ref # 21/NTB/115	The ALLG NBCR is governed by several committees with regular reporting and feedback mechanisms. The ALLG Registry Operations Committee (ROC) oversees the day-to-day operations and performance metrics of the registry to ensure key targets are met. The ALLG Scientific Advisory Committee liaise with the ALLG ROC to direct the scientific validity and direction. The ALLG membership is provided with regular updates, including the ALLG Biannual Scientific Meeting. There are also regular reporting mechanisms to the approving HRECs and RGOs via annual reports.	Offered to patients with Myelodysplastic syndromes (MDS)	Nil	Australian Capital Territory Canberra Hospital New South Wales Blacktown Hospital Border Medical Oncology Research Unit Concord Hospital Gosford Hospital Liverpool Hospital Calvary Mater Hospital Nepean Hospital Orange Health Service Princes of Wales Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital St Vincent's Sydney The Tweed Hospital Wollongong Hospital Northern Territory Royal Darwin Hospital Queensland Gold Coast Hospital Icon Cancer Centre Princess Alexandra Hospital Royal Brisbane Hospital Rockhampton Hospital Sunshine Coast Hospital Toowoomba Hospital Townsville Hospital South Australia Royal Adelaide Hospital Flinders Medical Centre Queen Elizabeth Hospital Tasmania Royal Hobart Hospital Launceston Hospital Victoria Alfred Hospital Austin Hospital Box Hill Hospital Geelong Hospital Monash Health Northern Hospital Royal Melbourne Hospital Peter MacCallum Hospital St Vincent's Melbourne Western Australia Fiona Stanley Hospital Royal Perth Hospital Sir Charles Gairdner Hospital New Zealand Auckland Hospital Christchurch Hospital North Shore Hospital Waikato Hospital Wellington Hospital
ACSQHC-ARCR-292	Cystic Fibrosis	Nil	The Australian Cystic Fibrosis Data Registry	ACFDR	https://www.cysticfibrosis.org.au/cf-data-registry/	Professor Susannah Ahern, Academic Lead, Monash University,susannah.ahern@monash.edu Isabella Hall, Registry Coordinator, Monash University, Med-acfdregistry@monash.edu	1996	The ACFDR is a population-level clinical registry that aims to accurately characterise the demographics, changing patterns of disease and treatments, morbidity and mortality of the population of patients with cystic fibrosis (CF) over time. The registry captures all people diagnosed with CF who attend participating specialist CF treatment centres in Australia (including outreach services), which is estimated to cover over 90% of patients diagnosed with CF nationally. The ACFDR uses either opt-in consent (mainly for paediatric patients) or opt-out consent (for some adult patients) to collect baseline and longitudinal information. Information is collected annually and per hospital or clinic encounter for each patient. The ACFDR has contributed significantly to our understanding of CF in Australia through monitoring trends in measures such as age at diagnosis, method of diagnosis, lung function and weight over time, CF-related complications and treatments, transplantation, mortality and expected age of survival. The registry aims to improve quality of care by monitoring and benchmarking patient outcomes in individual CF centres compared to each other, and compared to their own site over time. The ACFDR is increasingly being used to monitor the impact of new therapies, and to support clinical trials. The ACFDR collaborates with international CF registries via an International CF Registries Harmonisation Committee and with the John Hopkins-led CFTR2 genetic mutation database.	Cystic Fibrosis Australia	Ethics approval received The Alfred HREC Protocol Number: HREC/16/Alfred/187	The ACFDR produces: A public Annual Report Site-specific annual centre trend and Centre Comparison (benchmarked) reports to participating clinicians and CF teams Jurisdictional reports Annual patient-facing Infographic	A project is underway that is exploring suitable PROMs for inclusion in the registry.	Nil	Queensland Gold Coast University Hospital Mater Hospital Queensland Children Hospital The Prince Charles Hospital New South Wales Gosford Hospital John Hunter Children's Hospital John Hunter Hospital – Adults Royal Prince Alfred Hospital Sydney Children's Hospital The Children's Hospital at Westmead Westmead Hospital Tasmania Launceston General Hospital North West Regional Hospital Burnie Royal Hobart Children Hospital Tasmanian Adult CF Service Victoria Monash Medical Centre Royal Children's Hospital The Alfred Hospital Western Australia Perth Children's Hospital Sir Charles Gairdner Hospital South Australia Royal Adelaide Hospital Women's and Children's Hospital Australian Capital Territory The Canberra Hospital – Adults The Centenary Hospital for Women and Children
ACSQHC-ARCR-294	Adult and Paediatric Critical Care	Adult critical care	ANZICS Intensive Care Clinical Registries (includes APD, ANZPIC, CCR, ECMO & CLABSI data sets)	ANZICS CORE Registries	www.anzics.com.au	Sue Huckson, Australian and New Zealand Intensive Care Society,sue.huckson@anzics.com.au	1992	The Australian and New Zealand Intensive Care Society (ANZICS) Centre for Outcome and Resource Evaluation (CORE) is a bi-national peer review and quality assurance program which has provided audit and analysis of the performance of Australian and New Zealand intensive care since 1992. This capability is uniquely provided by ANZICS, which offers an overview across regional, state, federal and international jurisdictions. ANZICS CORE is made up of 5 data sets: The Adult Patient Database (APD) The Australian and New Zealand Paediatric Intensive Care (ANZPIC) dataset The Critical Care Resources (CCR) dataset Extra Corporeal Membrane Oxygenation (ECMO) dataset The Central line associated bloodstream Infections (CLABSI) Registry. Over 180 sites across Australia and New Zealand submit data regularly to the registries contributing approximately 200,000 individual patient records every year. There are over 2.5 million individual de-identified ICU patient episodes stored in the registry warehouse since 1992. The primary outcome reported by the ANZICS registries to contributing sites is in-hospital mortality. However, the overall long-term survival outcomes of patients who leave ICU alive are unknown. The aims of the ANZICS CORE Registry Program are: Provision of comparative benchmarking reports to submitting ICUs and health departments detailing variation in process measures, quality of care indicators and risk-adjusted clinical outcomes Identification and analysis of outlier ICUs Provision of Data Quality training workshops to support submission of high quality data Assist researchers to identify potential areas for improvement of Intensive Care practices and patient outcomes.	Australian and New Zealand Intensive Care Society	Quality improvement initiative A Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973	Reported in Annual Report Shared with clinicians Shared with consumers Shared with hospital executive Online clinical reports available to all submitting units Formalised quarterly reports to all jurisdictional funders, with access to online data and reports Results of annual survey of Critical Care Resources results provided to submitting units and jurisdictions Activity reports detailing adult and paediatric Intensive Care practices, resources and outcomes produced annually 15-20 publications in peer-reviewed journals per year	In development	In development	Australian Capital Territory Calvary Hospital (Canberra) ICU Calvary John James Hospital ICU Canberra Hospital ICU National Capital Private Hospital ICU New South Wales Armidale Rural Referral Hospital ICU Bankstown-Lidcombe Hospital ICU Bathurst Base Hospital ICU Blacktown Hospital ICU Bowral Hospital HDU Broken Hill Base Hospital & Health Services ICU Calvary Health Care Riverina ICU Calvary Mater Newcastle ICU Campbelltown Hospital ICU Canterbury Hospital ICU Coffs Harbour Health Campus ICU Concord Hospital ICU Dubbo Base Hospital ICU Fairfield Hospital ICU Gosford Hospital ICU Gosford Private Hospital ICU Goulburn Base Hospital ICU Grafton Base Hospital ICU Griffith Base Hospital ICU Hornsby Ku-ring-gai Hospital ICU Hurstville Private Hospital ICU John Hunter Children’s Hospital PICU John Hunter Hospital ICU Kareena Private Hospital ICU Kempsey District Hospital HDU Lake Macquarie Private Hospital ICU Lismore Base Hospital ICU Liverpool Hospital ICU Macquarie University Private Hospital ICU Manly Hospital & Community Health ICU Manning Rural Referral Hospital ICU Mater Private Hospital (Sydney) ICU Mona Vale Hospital ICU Nepean Hospital ICU Newcastle Private Hospital ICU North Shore Private Hospital ICU Norwest Private Hospital ICU Orange Base Hospital ICU Port Macquarie Base Hospital ICU Prince of Wales Hospital ICU Prince of Wales Private Hospital ICU Royal North Shore Hospital ICU Royal Prince Alfred Hospital ICU Shoalhaven Hospital ICU South East Regional Hospital ICU St George Hospital CICU St George Hospital ICU St George Hospital ICU2 St George Private Hospital ICU St Vincent's Hospital ICU St Vincent's Private Hospital ICU Strathfield Private Hospital ICU Sutherland Hospital & Community Health Services ICU Sydney Adventist Hospital ICU Sydney Children's Hospital PICU Sydney Southwest Private Hospital ICU Tamworth Base Hospital ICU The Children's Hospital at Westmead PICU The Chris O’Brien Lifehouse ICU Tweed Heads District Hospital ICU Wagga Wagga Base Hospital & District Health ICU Westmead Hospital ICU Westmead Private Hospital ICU Wollongong Hospital ICU Wollongong Private Hospital ICU Wyong Hospital ICU Northern Territory Alice Springs Hospital ICU Royal Darwin Hospital ICU Queensland Brisbane Private Hospital ICU Buderim Private Hospital ICU Bundaberg Base Hospital ICU Caboolture Hospital HDU Cairns Hospital ICU Gold Coast Private Hospital ICU Gold Coast University Hospital ICU Gold Coast University Hospital ICU - Paeds Greenslopes Private Hospital ICU Hervey Bay Hospital ICU Holy Spirit Northside Hospital ICU Ipswich Hospital ICU John Flynn Private Hospital ICU Logan Hospital ICU Mackay Base Hospital ICU Mater Adults Hospital ICU Mater Health Services North Queensland ICU Mater Private Hospital ICU Mount Isa Hospital ICU Noosa Hospital ICU Pindara Private Hospital ICU Princess Alexandra Hospital ICU Queen Elizabeth II Jubilee Hospital ICU Queensland Children's Hospital PICU Redcliffe Hospital ICU Robina Hospital ICU Rockhampton Hospital ICU Royal Brisbane and Women's Hospital ICU St Andrew's Hospital Toowoomba ICU St Andrew's War Memorial Hospital ICU St Vincent's Hospital ICU Sunnybank Hospital ICU The Prince Charles Hospital ICU Sunshine Coast University Hospital ICU Sunshine Coast University Hospital ICU - Paeds The Sunshine Coast Private Hospital ICU The Townsville Hospital ICU The Townsville Hospital ICU - Paeds The Wesley Hospital ICU Toowoomba Hospital ICU South Australia Ashford Community Hospital ICU Calvary North Adelaide Hospital ICU Calvary Wakefield Hospital ICU Flinders Medical Centre ICU Flinders Private Hospital ICU Lyell McEwin Hospital ICU Royal Adelaide Hospital ICU St Andrew's Hospital ICU The Memorial Hospital ICU The Queen Elizabeth ICU Western Hospital Women's and Children's Hospital PICU Tasmania Launceston General Hospital ICU North West Regional Hospital ICU Royal Hobart Hospital ICU Royal Hobart Hospital NICU/PICU Victoria Albury Wodonga Health ICU Alfred Hospital ICU Austin Hospital ICU Ballarat Health Services ICU Bendigo Health Care Group ICU Box Hill Hospital ICU Cabrini Hospital ICU Central Gippsland Health Service ICU Dandenong Hospital ICU Epworth Eastern Private Hospital ICU Epworth Freemasons Hospital ICU Epworth Geelong ICU Epworth Hospital ICU Footscray Hospital ICU Frankston Hospital ICU Goulburn Valley Health ICU Holmesglen Private Hospital ICU John Fawkner Hospital ICU Knox Private Hospital ICU Latrobe Regional Hospital ICU Maroondah Hospital ICU Melbourne Private Hospital ICU Mildura Base Hospital ICU Monash Children's Hospital PICU Monash Medical Centre-Clayton Campus ICU Northeast Health Wangaratta ICU Peninsula Private Hospital ICU Royal Children's Hospital PICU Royal Melbourne Hospital ICU South West Healthcare ICU St John Of God Hospital (Berwick) ICU St John Of God Hospital (Ballarat) ICU St John of God Hospital (Bendigo) ICU St John Of God Hospital (Geelong) ICU St Vincent's Hospital ICU St Vincent's Private Hospital Fitzroy ICU Sunshine Hospital ICU The Bays Hospital ICU The Northern Hospital ICU The Valley Private Hospital ICU University Hospital Geelong ICU Warringal Private Hospital ICU Western District Health Service ICU Western Private Hospital ICU Wimmera Health Care Group ICU Western Australia Armadale Health Service ICU Bunbury Regional Hospital ICU Fiona Stanley Hospital ICU Joondalup Health Campus ICU Mount Hospital ICU Perth Children's Hospital PICU Rockingham General Hospital ICU Royal Perth Hospital ICU Sir Charles Gairdner Hospital ICU St John Of God Health Care (Subiaco) ICU St John Of God Hospital (Murdoch) ICU St John of God Midland Public & Private ICU New Zealand Auckland City Hospital CV ICU Auckland City Hospital DCCM Christchurch Hospital ICU Dunedin Hospital ICU Greymouth Hospital ICU Hawkes Bay Hospital ICU Hutt Hospital ICU Middlemore Hospital ICU Nelson Hospital ICU North Shore Hospital ICU Palmerston North Hospital ICU Rotorua Hospital ICU Southern Cross Hospital ICU Southland Hospital ICU Starship Children's Hospital PICU Taranaki Health ICU Tauranga Hospital ICU Timaru Hospital ICU Waikato Hospital ICU Wairau Hospital ICU Wakefield Hospital ICU Whanganui Hospital ICU Wellington Hospital ICU Whangarei Area Hospital, Northland Health Ltd ICU
ACSQHC-ARCR-299	Mental Health	Mental Health	Transcranial Magnetic Stimulation (TMS) and Brain Stimulation Research Registry	TMS-REG	https://medicine-psychology.anu.edu.au/research/research-projects/transcranial-magnetic-stimulation-and-brain-stimulation-research	Paul Fitzgerald, The Australian National University, tmsregistry.smp@anu.edu.au	2024	The purpose of the Registry is the collection of outcome and safety data on the use of transcranial magnetic stimulation (TMS) and other brain stimulation techniques. The Registry will include any patients receiving TMS who are referred by their treating physician and consent to participate in data collection. The Registry will expand to include other brain stimulation techniques in the future. The outcomes measured will depend on their diagnosis.	The Australian National University	Ethics reference: 2023.ETH.00179 ACT Health Human Research Ethics Committee	Registry website Peer-reviewed publications With the participants consent, clinical outcome data can be reported to their treating doctor/team via an automated system.	Various PROMS to measure changes in depression, PTSD, OCD, and other psychiatric symptoms, including: Patient Health Questionnaire-9 (PHQ-9) Impact of Event Scale-Revised (IES-R) (PTSD only) Obsessional Compulsive Inventory - Revised (OCI-R) (OCD only) Generalize Anxiety Disorder 7 - Item (GAD-7) Depression Anxiety and Stress Scale 21 (DASS-21) Side Effects Assessment of Quality of Life (AQoL-8D)	Nil	No sites. Registry works by referral by treating physician/team.
ACSQHC-ARCR-307	Lymphoma and related diseases	High burden cancers	Lymphoma and related Diseases Registry	LaRDR	https://lardr.org	Transfusion Research Unit, Monash University, SPHPM-Lymphoma@monash.edu	2016	The LaRDR uses existing platforms maintained by Monash University’s Department of Epidemiology and Preventive Medicine (DEPM). Data collection is undertaken by clinicians and staff at participating hospitals and private practices, with data entered into an electronic case report form (CRF) by way of a web portal. The aims of the Australian and New Zealand Lymphoma and Related Diseases Registry (LaRDR) are to: Monitor access to care Benchmark outcomes nationally and internationally Explore variation in practice, process and outcome measures Monitor trends in incidence and survival Explore the factors that influence outcomes including survival and quality of life Act as a resource for clinical trials. Inclusion criteria: Patients with a new diagnosis of non-Hodgkin lymphoma, Hodgkin lymphoma, chronic lymphocytic leukaemia and related diseases Diagnosis within 6 months prior to HREC approval at the site, to minimise retrospective data collection. However, more detailed retrospective data may be collected in specific sub-groups as determined by the registry steering committee Age ≥18 years Cause of death listed as lymphoma. Exclusion criteria Patients who have chosen to ‘opt-off’ the registry. The following categories of data items will be collected: Health status at diagnosis Demographic details Laboratory and imaging results at diagnosis Therapy decisions, including including pre-therapy benchmarking, chemotherapy, autologous and allogeneic stem cell transplantation, and maintenance and supportive therapies Outcomes (overall and progression-free survival, duration of response and time to next treatment and QoL measures [using the EQ-5D-5L]) Long-term outcomes (through linkage with cancer and death registries).	Monash University	16213A/Monash Health HREC	Feedback to contributing clinicians Site specific report is given to each site that is participating Shared with clinicians Reported in Annual Report	Nil	Nil	Australian Capital Territory Canberra Hospital New South Wales Coffs Harbour Health Campus Concord Hospital Gosford Hospital Liverpool Hospital Port Macquarie Base Hospital Prince of Wales Hospital Royal North Shore Hospital St Vincent's Hospital Sydney Northern Territory Royal Darwin Hospital Queensland Gold Coast University Hospital Princess Alexandra Hospital Sunshine Coast University Hospital Townsville Hospital Toowoomba Hospital South Australia Flinders Medical Centre Royal Adelaide Hospital Tasmania Royal Hobart Hospital Victoria The Alfred Austin Health Barwon Health Box Hill Hospital Cabrini Health Epworth Hospital Grampians Health Monash Medical Centre Northern Hospital Peter MacCallum Cancer Centre St Vincent's Hospital Melbourne Western Health Western Australia Fiona Stanley Hospital Rockingham General Hospital Royal Perth Hospital Sir Charles Gairdner Hospital New Zealand Auckland City Hospital Christchurch Hospital
ACSQHC-ARCR-310	Prostate Cancer	High burden cancers	Prostate Cancer Outcomes Registry - Northern Territory	PCOR-NT	https://prostatecancerregistry.org/	Cheryl Plawecki, NT Radiation Oncology, Alan Walker Cancer Care Centre Royal Darwin Hospital, ProstateRegistry.DoH@nt.gov.au	2015	The purpose of this registry is to record patients demography, treatments and clinical outcomes to improve quality of care for men diagnosed with prostate cancer. The Registry, PCOR-NT office is located at Alan Walker Cancer Care Centre, Royal Darwin Hospital. PCOR-NT has registered 427 men with newly diagnosed prostate cancer in its registry (as at 19/07/2021). NT clinical researchers are able to request access to PCOR-NT data through the Steering Committee. PCOR-NT transfer data to PCOR-ANZ for the publication of the annual reports. PCOR-NT Steering Committee Members consist of Oncologists, Urologists, NT Department of Health Representatives, Prostate Cancer Nurse and Patient Representative.	Alan Walker Cancer Care Centre, Top End Health Services Northern Territory	Central Australian Human Research Ethics Committee CAHREC-16-392; Menzies School of Health Research HREC2015-2407	Reported in Annual Report Shared with clinicians Shared with hospital executive	The Expanded Prostate Cancer Index Composite (EPIC-26) Short Form - a Quality of Life questionnaire	Nil	https://prostatecancerregistry.org/whos-involved/ Northern Territory Royal Darwin Hospital Alice Springs Hospital Darwin Private Hospital
ACSQHC-ARCR-317	Islet cell and pancreas transplantation	Adult critical care	Australia and New Zealand Islet and Pancreas Transplant Registry	ANZIPTR	http://anziptr.org/	ANZIPTR manager, Australia and New Zealand Islet and Pancreas Transplant Unit, info@anziptr.org	1986	ANZIPTR is based at Westmead Hospital in NSW, Australia. The Registry operates at Westmead Hospital under contract from the Australian Organ and Tissue Authority. The registry is responsible for recording and maintaining data about the islet and pancreas transplants performed in Australia and New Zealand. Information about donors and recipients of pancreas and islets transplants is collected by the registry from the participating units and stored in a secured database.	Governance of the ANZIPTR registry is undertaken by the registry secretariat based at Westmead hospital under contract from the Australian Organ and Tissue Authority	Quality improvement initiative - Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973	Feedback to contributing clinicians Reported in Annual Report Reported in other public reports Reported to State/Territory health departments Shared with consumers Shared with other clinicians	Nil	Nil	New South Wales Westmead Hospital South Australia The Royal Adelaide Hospital Victoria Monash Medical Centre - Clayton Campus St Vincent's Hospital (Melbourne) Ltd New Zealand Auckland Hospital
ACSQHC-ARCR-320	Fetal and Neonatal Alloimmune Thrombocytopenia	Neonatal critical care	Neonatal Alloimmune Thrombocytopenia Registry	NAIT Registry	www.monash.edu/medicine/sphpm/registries/nait	Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu	2009	The Neonatal Alloimmune Thrombocytopenia (NAIT) Registry is a register of women who develop or have a history of NAIT, and their children, both before and after birth. The registry captures data on the presentation, treatment and clinical outcomes of this rare condition. Individual NAIT patients require considerable support, with high diagnostic needs and high transfusion requirements, often with special products. The NAIT registry was established to address evidence gaps in the treatment, management and outcome of Australian NAIT cases, and to support hypothesis-driven research in this area. Patients who have been diagnosed with (and/or managed as suspected) NAIT are eligible for inclusion in the registry. They may be identified by treating clinicians from participating hospitals or registry staff, or based on laboratory data provided by the Australian Red Cross Blood Service. Patients may also identify themselves to the registry. Patients are not excluded unless they choose to ‘opt-off’ the registry, as explained in the study brochure and opt-off information. Routinely collected information in the diagnosis and treatment of NAIT is entered into a web-based data collection form. Clinical data collection is undertaken by clinicians and some laboratory data by the Blood Service. Data management and analysis is undertaken by the Monash University Department of Epidemiology and Preventive Medicine.	Monash University	Monash Health Human Research Ethics Committee Reference: HREC/56750/MonH2019-186606(v1)	Shared with clinicians Periodic newsletters Presentations at local and national scientific meetings Publications in the peer-reviewed literature	Nil	Nil	Australian Capital Territory Canberra Hospital Victoria Barwon Health Epworth HealthCare Mercy Hospital for Women Monash Medical Centre Royal Children's Hospital Royal Women's Hospital Sunshine Hospital (Western Health) New South Wales Children's Hospital Westmead John Hunter Hospital Liverpool Hospital Nepean Hospital Royal Hospital for Women Royal North Shore Hospital Royal Prince Alfred Hospital St George's Public Hospital Sydney Adventist Hospital Westmead Hospital Wollongong Hospital Queensland Royal Brisbane & Women’s Hospital Royal Children's Hospital Brisbane (Herston) Mater Mother's Hospital Townsville Hospital Northern Territory Royal Darwin Hospital Western Australia Fiona Stanley Hospital King Edward Memorial Hospital Royal Perth Hospital South Australia Flinders Medical Centre Women's and Children's Hospital Tasmania Royal Hobart Hospital
ACSQHC-ARCR-321	Diabetes-related foot complications	Diabetes	Australian Diabetes Foot Registry	ADFR	https://nadc.net.au/hrfs-data-collection/	Joel Lasschuit, National Association of Diabetes Centres, joel@nadc.net.au	2020	The Australian Diabetes Foot Registry standardises data collection in High Risk Foot Services (HRFS) nationally, providing an unprecedented opportunity for audit, benchmarking, quality improvement and collaborative research. HRFS deliver specialist interdisciplinary care to people with diabetes-related foot complications, including ulceration, osteomyelitis and Charcot foot. These services are established to reduce the healthcare and individual burden of diabetes-related foot complications by coordinating care, reducing hospitalisation and improving clinical outcomes. However, prior to establishment of the ADFR, siloed and often insufficient data collection practices impeded comprehensive outcome evaluation. With introduction of a national HRFS Standards and Accreditation program by the National Association of Diabetes Centres, the need for national data collection, centralised support and infrastructure to meet quality improvement standards was recognised. The primary objective of the ADFR is to develop a standardised Australian diabetes repository for HRFS. Secondary objectives are to evaluate service and clinical outcomes, perform national benchmarking, provide reports to participating services, and establish a platform for local and collaborative research. Data is prospectively and longitudinally collected on people with diabetes and one or more active foot complications attending a participating HRFS. The project has ethics approval under the National Mutual Acceptance Scheme with an opt-out consent approach (waiver of consent in WA and NT). Data and outcome domains span participant demographics, diabetes characteristics, comorbidities, ulceration characteristics and classification, Charcot foot characteristics and classification, referral processes, telehealth utilisation, interdisciplinary involvement, offloading practices, antibiotic prescription, hospitalisations, surgical interventions including amputation, service wait times, remission and recurrence of complications, and service separation.	Australian Diabetes Society	St Vincent’s Hospital Sydney HREC: 2020/ETH01087 (NMA) Northern Territory Department of Health and Menzies School of Health Research HREC: 2021-4131 (NT) St John of God Health HREC: 2160 (SJGHC only)	Feedback to contributing clinicians Shared with other clinicians Reported in an Annual Report to participating sites	Nil	Nil	Australian Capital Territory The Canberra Hospital New South Wales Bankstown-Lidcombe Hospital Campbelltown Hospital Dubbo Base Hospital Gosford Hospital Liverpool Hospital Nepean Hospital Port Macquarie Community Health Campus Royal Prince Alfred Hospital Shoalhaven District Memorial Hospital St Vincent's Hospital (Darlinghurst) Tamworth Rural Referral Hospital Wagga Wagga Rural Referral Hospital Wollongong Community Health Centre Wollongong Hospital Wyong Public Hospital Northern Territory Palmerston Regional Hospital Royal Darwin Hospital Queensland Mater Hospital Brisbane South Australia Flinders Medical Centre Marion GP Plus Health Care Centre Noarlunga Health Service The Queen Elizabeth Hospital The Royal Adelaide Hospital Tasmania Launceston General Hospital North West Regional Hospital Royal Hobart Hospital Victoria Albury Wodonga Health Austin Health - Austin Hospital Box Hill Hospital Grampians Health Ballarat Goulburn Valley Health - Shepparton Campus Latrobe Community Health Service Latrobe Regional Hospital Maroondah Hospital Monash Medical Centre - Clayton Campus Northeast Health Wangaratta Northern Hospital Epping St Vincent's Hospital (Melbourne) Ltd Western Health Western Australia Bentley Health Service Fiona Stanley Hospital Joondalup Health Campus Fremantle Hospital And Health Service Royal Perth Hospital Sir Charles Gairdner Hospital St John of God Midland Public and Private Hospitals
ACSQHC-ARCR-322	Breast device surgery	High burden cancers	The Australian Breast Device Registry	ABDR	https://www.abdr.org.au/	Ingrid Hopper, Monash University, ingrid.hopper@monash.edu	2015	The Australian Breast Device Registry (ABDR) is a Commonwealth-funded Monash University-led health initiative and is endorsed by major surgical societies in Australia. The ABDR’s continuing mission is to improve patient outcomes by identifying and reporting on possible trends and complications associated with breast device surgery; tracking the long-term safety and performance of implantable breast devices; monitoring performance of breast devices and benchmarking the quality of surgery involving breast implants, breast tissue expanders and acellular dermal matrices; and identifying best surgical practice and optimal patient health outcome. The ABDR collects information about breast devices using a simple data collection form (DCF) completed by surgeons at the time of surgery across the eligible sites Australia-wide. ABDR collects data related to all surgical procedures involving breast implants, breast tissue expanders and acellular dermal matrices (or similar) undertaken nationally. This include insertions, revisions of in situ devices, and explants without replacement. Information from the DCFs generates a powerful set of accurate and validated data that can be analysed and reported to individual surgeons, hospitals, the department of health and other key stakeholders. The ABDR produces information on device failure rates, complications and revision rates of procedures involving breast devices nationally. Additional to data collected at the time of surgery and revision surgery, the ABDR asks patients brief questions about their health at 1, 2, 5 and 10 years post-surgery. This sub-study is named as Patient Reported Outcome Measures (PROMs).	Monash University	Multiple HRECs, lead site is Alfred Hospital HREC 5/15 and Monash University	Feedback to contributing clinicians Shared with clinicians Shared with consumers Shared with hospital executive Reported in Annual Report Reported in other public reports	BREAST-Q Implant Surveillance module (BREAST-Q IS)	Nil	https://www.abdr.org.au/about-us/participating-sites/ Victoria Austin Hospital Ballarat Base Hospital Beleura Private Hospital Bellbird Private Hospital Bendigo Day Surgery Bendigo Hospital Box Hill Hospital Broadmeadows Hospital Cabrini Hospital- Brighton Cabrini Hospital – Malvern Casey Hospital Corymbia House Cotham Private Hospital Dandenong Hospital Dr Lanzers Cosmetic Surgery Eastlink Surgical & Specialist Centre (closed) Epworth Cliveden Epworth Eastern Epworth Freemasons Epworth Geelong Epworth Hawthorn Epworth Richmond Footscray Hospital Frances Perry House Frankston Hospital Glenferrie Private Hospital Goulburn Valley Health Hamilton Base Hospital Holmesglen Private Hospital John Fawkner Private Hospital Knox Private Hospital Linacre Private Hospital Linley Clinic (closed) Maroondah Hospital Maryvale Private Hospital Masada Private Hospital Melbourne Private Hospital Mitcham Private Hospital Monash House Private Hospital Moorabbin Hospital Northpark Private Hospital Peninsula Private Hospital Peter MacCallum Cancer Centre Repatriation Hospital (The Surgery Centre) Ringwood Private Hospital Shepparton Private Hospital Sir John Monash Private Hospital St John of God Ballarat St John of God Bendigo St John of God Berwick St John of God Geelong St John of God Warrnambool St Kilda Day Hospital St Vincent’s Private Hospital East Melbourne St Vincent’s Private Hospital Fitzroy St Vincent’s Private Hospital Kew St Vincent’s Private Hospital Werribee Stonnington Day Surgery Sunshine Hospital The Alfred Hospital The Avenue Hospital The Bays Hospital The Melbourne Eastern Private Hospital The Northern Hospital The Royal Children’s Hospita The Royal Melbourne Hospital The Royal Women’s Hospital The Valley Private Hospital University Hospital Geelong Victorian Cosmetic Institute Day Surgery Warringal Private Hospital Warrnambool Base Hospital Waverley Private Hospital Western Private Hospital Williamstown Hospital Windsor Private Hospital Wyndham Clinic Private Hospital Western Australia Bethesda Hospital Bunbury Day Surgery Cambridge Day Surgery Colin Street Day Surgery Concept Fertility Centre and Day Hospital Glengarry Private Hospital Hollywood Private Hospital Joondalup Health Campus Mount Hospital Peel Health Campus St John of God Bunbury Hospital SJOG Midland Public & Private Hospital (previously Swan District Hospital) St John of God Mt Lawley Hospital St John of God Murdoch Hospital St John of God Subiaco Hospital St John of God Wembley Day Surgery Southbank Day Surgery Subiaco Private Hospital Waikiki Private Hospital West Leederville Private Hospital Australian Capital Territory Barton Private Hospital Calvary Bruce Private Hospital Calvary Bruce Public Hospital Calvary John James Hospital Canberra Private Hospital National Capital Private Hospital Sole’vita Surgery Tasmania Calvary Health Care Tasmania St John’s Campus Calvary Health Care Tasmania St Vincent’s Campus Hobart Private Hospital Launceston General Hospital North Tas Day Hospital Royal Hobart Hospital Northern Territory Darwin Day Surgery Darwin Private Hospital Royal Darwin Hospital New South Wales Aesthetic Day Surgery Alexandria Specialist Day Hospital Artarmon Day Surgery Auburn Hospital NSW Australia Plastic Surgery Sydney Bankstown-Lidcombe Hospital Baringa Private Hospital Bathurst Base Hospital Bathurst Private Hospital Belmont Hospital Bondi Junction Private Hospital Brisbane Waters Private Hospital Calvary Mater Newcastle Calvary Riverina Hospital, Wagga Wagga Campbelltown Private Hospital Castlecrag Private Hospital Castle Hill Day Surgery (closed) Charlestown Private Hospital Concord Repatriation General Hospital Crows Nest Day Surgery Double Bay Day Hospital Double Bay Day Surgery East Sydney Private Hospital Gosford Hospital Gosford Private Hospital Holroyd Private Hospital Honeysuckle Day Surgery Hornsby and Ku-ring-gai Hospital Hospital for Specialist Surgery Hunter Valley Private Hospital Hunters Hill Private Hospital Hurstville Private Hospital Kareena Private Hospital Kingsgrove Day Hospital Kingsway Day Surgery Lake Macquarie Private Hospital Lingard Private Hospital Liverpool Hospital Macquarie St Day Surgery Macquarie University Hospital Maitland Private Hospital Mater Hospital, North Sydney Mount Druitt Hospital My Cosmetic Clinic Nepean Hospital Nepean Private Hospital Northern Beaches Hospital North Shore Private Hospital North Shore Specialist Day Hospital Norwest Day Hospital Norwest Private Hospital Nowra Private Hospital Pittwater Day Surgery Port Macquarie Private Hospital Prince of Wales Hospital Prince of Wales Private Hospital Riverina Day Surgery Royal Hospital for Women, Sydney Royal North Shore Hospital San Day Surgery, Hornsby Southern Highlands Private Hospital St George Hospital St Luke’s Private Hospital St Vincent’s Hospital St Vincent’s Private Community Hospital, Griffith St Vincent’s Private Hospital, Sydney Strathfield Private Hospital Surry Hills Day Hospital Sydney Adventist Hospital Sydney Day Hospital Sydney Private Hospital Sydney Southwest Private Hospital Sydney Surgical Centre Tamara Private Hospital Tamworth Base Hospital The Tweed Hospital Wagga Wagga Rural Referral Hospital Waratah Private Hospital Warners Bay Private Hospital Westmead Hospital Westmead Private Hospital Westside Private Hospital Wollongong Day Surgery Wollongong Hospital Wollongong Private Hospital South Australia Adelaide Day Surgery Ashford Hospital Brighton Day Surgery Burnside War Memorial Hospital Calvary North Adelaide Hospital Calvary Wakefield Hospital Calvary Wakefield Surgicentre Flinders Medical Centre Flinders Private Hospital Glenelg Community Hospital Hamilton House Day Surgery Lyell McEwin Hospital Modbury Hospital Noarlunga Hospital North Adelaide Day Surgery Norwood Day Surgery Parkside Cosmetic Surgery Royal Adelaide Hospital St Andrew’s Hospital The Memorial Hospital The Stirling District Hospital The Queen Elizabeth Hospital The Western Hospital Waverley House Plastic Surgery Centre Women’s and Children’s Hospital Queensland Brisbane Day Hospital Brisbane Private Hospital Caboolture Private Hospital Cairns Base Hospital Cairns Day Surgery Cairns Private Hospital Canossa Private Hospital Chermside Day Hospital Far North Day Hospital (Cairns Central Day Hospital) Friendly Society Private Hospital Gold Coast Private Hospital Gold Coast Surgical Hospital (closed) Gold Coast University Hospital Greenslopes Private Hospital Hillcrest Rockhampton Private Hospital Ipswich Day Hospital John Flynn Private Hospital Kawana Private Hospital Mater Hospital Brisbane Mater Hospital Pimlico Mater Private Hospital Brisbane Mater Private Hospital Springfield Mater Women’s and Children’s Hospital Hyde Park Mercy Health Gladstone – Mater Misericordiae Hospital Gladstone Mercy Health Mackay – Mater Misericordiae Hospital Mackay Mercy Health Rockhampton – Mater Misericordiae Hospital Rockhampton Miami Day Hospital Montserrat – Gaythorne Day Hospital Montserrat – North Lakes Day Hospital Montserrat – Samford Road Day Hospital Noosa Hospital North West Private Hospital Pacific Day Surgery Pacific Private Day Hospital Pindara Day Procedure Centre Pindara Private Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Redland Hospital Renaissant Aesthetic Health Rockhampton Hospital Robina Hospital Royal Brisbane & Women’s Hospital South Bank Day Hospital Southport Day Hospital Spring Hill Specialist Day Hospital St Andrew’s Private Hospital Ipswich St Andrew’s Toowoomba Hospital St Vincent’s Private Hospital – Brisbane St Vincent’s Private Hospital – Holy Spirit Northside Sunshine Coast Day Surgery Sunshine Coast University Private Hospital Toowoomba Surgicentre Townsville Hospital UnitingCare – Buderim Private Hospital UnitingCare – St Andrew’s War Memorial Hospital UnitingCare – St Stephen’s Hospital UnitingCare – The Wesley Hospital Varsity Lakes Day Hospital
ACSQHC-ARCR-325	Trauma	Trauma	Victorian State Trauma Registry	VSTR	https://www.monash.edu/medicine/sphpm/vstorm	Professor Belinda Gabbe, Monash University, belinda.gabbe@monash.edu	2001	The 1999 Review of Trauma and Emergency Services (ROTES) report recognised that an effective trauma system requires formal monitoring and feedback processes. It recommended a state trauma registry be established to ascertain the effectiveness of the system and to provide ongoing monitoring of major trauma patients. The Victorian State Trauma System (VSTS) was introduced to improve the delivery of trauma care in this state. The Victorian State Trauma Registry (VSTR) has enabled monitoring and analysis of the VSTS to critically review trauma care across the state with the aim of reducing preventable deaths and permanent disability from major trauma.	Department of Health (Victoria)	Department of Health (Victoria) HREC 11-14	Feedback to health services through Department of Health (Victoria) Case Review Group and State Trauma Advisory Committee.	The registry monitors collects PROMs at six, 12 and 24 months following injury. Function – Extended Glasgow Outcome Scale (GOS-E) Health-related quality of life – EQ-5D-5L Disability - WHO Disability Assessment Schedule Pain – Numerical Rating Scale Return to work and work disability	Nil	https://www.monash.edu/__data/assets/pdf_file/0011/1402121/VSTORM_Contributing-Health-Services.pdf Victoria Albury Wodonga Health: Albury Base Hospital Albury Wodonga Health (Wodonga) Alfred Health: The Alfred Alexandra District Hospital Alpine Health (Bright) Alpine Health (Mt Beauty) Alpine Health (Myrtleford) Austin Health: Austin Hospital Bairnsdale Regional Health Service Ballan District Health and Care Ballarat Health Services: Ballarat Base Hospital Balmoral Bush Nursing Centre Barwon Health: The Geelong Hospital Bass Coast Regional Health (Wonthaggi) Bayside Health: Sandringham and District Memorial Hospital Beaufort and Skipton Health Service (Beaufort) Beaufort and Skipton Health Service (Skipton) Beechworth Health Service Benalla and District Memorial Hospital Bendigo Health Care Group: Bendigo Hospital Boort District Health Buchan Bush Nursing Centre Cann Valley Bush Nursing Centre Casterton Memorial Hospital Castlemaine Health (Mt Alexander) Central Gippsland Health Service (Sale) Cobden District Health Service Cobram District Hospital Cohuna District Hospital Colac Area Health (Birregurra Community Health Centre) Colac Area Health (Colac) Dargo Bush Nursing Centre Inc. Dartmoor and District Bush Nursing Centre Inc. Dingee Bush Nursing Centre Inc. Djerriwarrh Health Services (Bacchus Marsh) Dunmunkle Health Services (Rupanyup) East Grampians Health Service (Ararat) East Wimmera Health Service (Birchip) East Wimmera Health Service (Charlton) East Wimmera Health Service (Donald) East Wimmera Health Service (St Arnaud) East Wimmera Health Service (Wycheproof) Eastern Health: Box Hill Hospital Eastern Health: Maroondah Hospital Eastern Health: The Angliss Health Services Echuca Regional Health Edenhope and District Memorial Hospital Elmhurst Bush Nursing Centre Ensay Bush Nursing Service Inc Epworth Hospital Euroa Health Inc. Falls Creek Medical Centre Gelantipy District Bush Nursing Centre Gippsland Southern Health Service (Korumburra) Gippsland Southern Health Service (Leongatha) Goulburn Valley Health (Shepparton) Heathcote Health (McIvor) Hepburn Health Service (Creswick) Hepburn Health Service (Daylesford) Hesse Rural Health Service (Beeac) Hesse Rural Health Service (Rokewood) Hesse Rural Health Service (Winchelsea) Heyfield Hospital Inc Heywood Rural Health Inglewood and Districts Health Service Kerang and District Hospital Kilmore and District Hospital Knox Private Hospital Kyabram and District Health Service Kyneton District Health Service Lake Bolac Bush Nursing Centre Latrobe Regional Hospital Lockington and District Bush Nursing Centre Inc. Lorne Community Hospital Maldon Hospital Mallee Track Health and Community Service Maryborough District Health Service Mansfield District Hospital Mercy Public Hospitals Inc: The Mercy Hospital Werribee Mildura Base Hospital Moyne Health Services (Port Fairy) Mt Buller Medical Centre Mt Hotham Medical Centre Nagambie Medical Centre Nathalia District Hospital Neerim District Soldiers Memorial Hospital Northeast Health Wangaratta Northern Health: The Northern Hospital Numurkah District Health Service Omeo District Hospital Orbost Regional Health Otway Health and Community Service (Apollo Bay) Peninsula Health: Frankston Hospital Peninsula Health: Rosebud Hospital Portland District Health Robinvale District Hospital and Health Service Rochester and Elmore District Health Service Rural Northwest Health (Hopetoun) Rural Northwest Health (Warracknabeal) Seymour District Memorial Hospital Sisters of Charity Health Service Melbourne: St Vincent’s Hospital St John of God Hospital Ballarat Stawell Regional Health South Gippsland Hospital (Foster) South West Health Care (Camperdown Campus) South West Health Care (Lismore) South West Health Care (Warrnambool Campus) Southern Health: Monash Medical Centre, Casey Campus Southern Health: Monash Medical Centre, Clayton Campus Southern Health: Monash Medical Centre, Moorabbin Campus Southern Health: Dandenong Hospital Swan Hill District Health Swifts Creek Bush Nursing Centre Inc. Tallangatta Health Service Terang and Mortlake Health Service (Mortlake) The Royal Children’s Hospital The Royal Melbourne Hospital Timboon and District Healthcare Service Upper Murray Health and Community Services (Corryong) Violet Town Bush Nursing Centre Walwa Bush Nursing Centre West Gippsland Healthcare Group (Warragul) West Wimmera Health Service (Jeparit) West Wimmera Health Service (Kaniva) West Wimmera Health Service (Nhill) West Wimmera Health Service (Rainbow) Western District Health Service (Hamilton) Western District Health Service (Merino) Western District Health Service (Penshurst) Western Health: Sunshine Hospital Western Health: Williamstown Hospital Western Health: Western Hospital Wimmera Health Care Group (Dimboola) Wimmera Health Care Group: Wimmera Base Hospital Woomelang Bush Nursing Centre Yarram and District Health Service Yarrawonga District Health Service Yea and District Memorial Hospital
ACSQHC-ARCR-330	Prostate cancer	High burden cancers	Prostate Cancer Outcomes Registry - Victoria	PCOR-Vic	https://www.monash.edu/medicine/sphpm/pcor-vic	Krupa Krishnaprasad and Nik Zeps, Monash University, pcor-vic@monash.edu	2009	PCOR-Vic focuses on describing patterns of care following a diagnosis of prostate cancer, monitoring quality of delivered care and whether it is in line with evidence-based guidelines. PCOR-Vic is a population-based registry currently capturing 87 per cent of all newly diagnosed cases of prostate cancer in Victoria. Outcomes measured: Positive margin rate post prostatectomy, documentation of clinical stage, PSA recorded pre-diagnosis and post prostatectomy, advanced disease and appropriate use of active surveillance, disease-specific quality of life at 12 months post treatment or diagnosis (if no treatment has occurred).	Monash University	HREC/16/Alfred/98	Feedback to contributing clinicians Shared with clinicians Reported in Annual Report Shared with hospital executive	The Expanded Prostate Cancer Index Composite (EPIC-26), EORTC QLQ - PR25 and questions from the Utilization of Sexual Medications/devices questionnaire (Libido questions only)	Nil	https://prostatecancerregistry.org/whos-involved/ Victoria Alfred Hospital (Alfred Health) Alfred Radiation Oncology (Alfred Health) Angliss Hospital (Eastern Health) Austin Hospital (Austin Health) Bairnsdale Regional Health Service Ballarat Health Service Bass Coast Health Beleura Private Hospital (Ramsay Health Care) Bendigo Health Box Hill Hospital (Eastern Health) Cabrini Hospital Brighton Cabrini Hospital Malvern Casey Hospital (Monash Health) Caulfield Hospital (Alfred Health) Central Gippsland Health Service Colac Area Health Dandenong Hospital (Monash Health) Echuca Regional Health Epworth Eastern Epworth Freemasons Epworth Geelong Epworth Hawthorn Epworth Richmond Footscray Hospital (Western Health) Frankston Hospital (Peninsula Health) Geelong Private Hospital GenesisCare Albury Wodonga GenesisCare Berwick GenesisCare Cabrini GenesisCare Epping GenesisCare Footscray GenesisCare Frankston GenesisCare Ringwood GenesisCare St Vincent's Gippsland Radiation Oncology Gippsland Southern Health Service Goulburn Valley Health Healesville Hospital (Eastern Health) Heidelberg Repatriation Hospital (Austin Health) Kerang and District Health Kyabram District Health Services Kyneton District Health Serivce Latrobe Regional Hospital Linarce Private Hospital (Ramsay Health Care) Maroondah Hospital (Eastern Health) Maryvale Private Hospital Masada Private Hospital Mildura Base Hospital Mildura Private Hospital Mitcham Private Hospital (Ramsay Health Care) Monash Medical Centre Clayton (Monash Health) Moorabbin Hospital (Monash Health) Northern Health Peninsula Private Hospital (Ramsay Health Care) Peter MacCallum Cancer Centre - Bendigo Peter MacCallum Cancer Centre - Box Hill Peter MacCallum Cancer Centre - Moorabbin Peter MacCallum Cancer Centre - Parkville Peter MacCallum Cancer Centre - Sunshine Portland District Health Rochester and Elmore District Health Service Rosebud Hospital (Peninsula Health) Royal Melbourne Hospital (Melbourne Health) Sandringham Hospital (Alfred Health) Shepparton Private Hospital (Ramsay Health Care) South Gippsland Hospital South West Healthcare (Warrnambool Base Hospital) St John of God - Ballarat St John of God - Bendigo St John of God - Geelong St John of God - Warrnambool St Vincent's Hospital Melbourne Sunshine Hospital (Western Health) Swan Hill District Hospital The Avenue Private Hospital (Ramsay Health Care) The Bays Private Hospital The Valley Private Hospital University Hospital Geelong Wangaratta Private Hospital (Ramsay Health Care) Wantirna Health (Eastern Health) Warringal Private Hospital (Ramsay Health Care) Waverley Private Hospital (Ramsay Health Care) West Gippsland Healthcare Group Western District Health Service Williamstown Hospital (Western Health) Yarra Ranges Health (Eastern Health)
ACSQHC-ARCR-332	Trauma	Trauma	South Australian Trauma Registry	SATR	Nil	Associate Professor Daniel Ellis, Director of Trauma, Royal Adelaide Hospital (CALHN), Co-Chair, South Australian Trauma System, dan.ellis@sa.gov.au Nicole Kelly, Trauma Service Nursing Director, Royal Adelaide Hospital (CALHN), Co-Chair, South Australian Trauma System, nicole.kelly@sa.gov.au	2018	The South Australian Trauma Registry collects information on all cases of major trauma admitted to the Royal Adelaide Hospital, Flinders Medical Centre, Women’s and Children’s Hospital and the Lyell McEwin Hospital. The information collected includes injuries sustained, mechanism of injury, details of care received including transfer (from injury scene to a hospital and between hospitals) and patient outcome. Data is extracted from SA Ambulance Service, MedSTAR, the clinical record and hospital systems which provide medical imaging and pathology reports. Reports from the SATR inform service providers about the quality of health care on a continuous basis in the different registry sites. The information is reported in various ways to the trauma clinical teams and is used to better understand opportunities for quality improvement. Clinical Indicator reports, published twice a year, bring together data from each of the hospital sites in addition to the production of ad hoc reports. Data from the SATR is also collated and reported (de-identified) to the Australian Trauma Quality Improvement Program led by Monash University (under an ethics agreement).	Department for Health and Wellbeing (SA)	Quality Improvement Initiative, authorised under Section 64 of the South Australian Health Care Act 2008	Shared with clinicians Reported in other (non-public) reports including clinical audits and clinical indicator reports Feedback to contributing clinicians Reported to State/Territory health departments	Currently no collection of any post-discharge outcome measures on trauma patients in South Australia thus the SATR does not include any Patient Reported Outcome Measures (PROMs)	The SATR does not report on patient reported experience measures (PREMS). All patient reported experiences for SA Health are recorded via the patient feedback platform on the Safety Learning System (SLS)	All four major metropolitan hospitals in South Australia participate in contributing data to the SA Trauma Registry which includes: SA’s Level 1 Adult Major Trauma Centres of the Royal Adelaide Hospital and Flinders Medical Centre SA’s Level 1 Paediatric Major Trauma Centre - Women’s and Children’s Hospital SA’s Level 3 Metropolitan Trauma Centre - the Lyell McEwin Hospital
ACSQHC-ARCR-341	End Stage Kidney Disease	Adult critical care	Australia and New Zealand Dialysis and Transplant Registry	ANZDATA	www.anzdata.org.au	Kylie Hurst, ANZDATA Registry, South Australian Health and Medical Research Institute, kylie@anzdata.org.au Stephen McDonald, ANZDATA Registry, South Australian Health and Medical Research Institute, anzdata@anzdata.org.au	1977	The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) is a clinical quality registry that collects and produces a wide range of statistics relating to the outcomes of treatment of those with end stage kidney disease (ESKD). ANZDATA has been in operation since 1977 (but contains data from precursor registries dating back to 1963). All renal units in Australia and New Zealand contribute data to ANZDATA. The Registry’s fundamental purpose is to report on the incidence, prevalence and outcomes of dialysis and transplant treatment for patients with ESKD, by providing information that is complete, accurate, clear, relevant, readily available and timely. Data from the Registry is regularly used to inform clinical practice, monitor quality of clinical care, plan health services, and conduct research projects.	South Australian Health and Medical Research Institute	Royal Adelaide Hospital HREC Reference: HREC/17/RAH/408	Feedback to contributing clinicians Reported in Annual Report Reported in other public reports Reported to state/territory health departments Shared with consumers Shared with hospital executive Shared with other clinicians	Pilot program and registry Clinical Trials underway currently using EQ5D	Nil	https://www.anzdata.org.au/?s=contributing+unit&data-group=anzdata Australian Capital Territory Access Nephrology Canberra Hospital New South Wales Bathurst Base Hospital Coffs Harbour Hospital Concord Hospital Dubbo Base Hospital Gosford Hospital Griffith Base Hospital John Hunter Hospital Lismore Hospital Lismore St Vincent's Private Dialysis Centre Liverpool Private Dialysis Centre Manning Rural Referral Hospital Mater Hospital Mayo Private Hospital - Taree Nepean Hospital Newcastle Nephrocare Northern Beaches Hospital Orange Hospital Port Macquarie Hospital Port Macquarie Private Hospital Prince Of Wales Hospital Royal North Shore Hospital Royal Prince Alfred Hospital South West Sydney Renal Service St George Hospital St Vincent's Hospital Sydney St Vincent's Private Hospital Sydney Sydney Adventist Hospital Sydney Childrens Hospital Tamworth Hospital The Children's Hospital At Westmead The Tweed Hospital Wagga Wagga Base Hospital Westmead Hospital Wollongong Hospital Northern Territory Alice Springs Hospital Royal Darwin Hospital Queensland Bundaberg Hospital Cairns Hospital Chermside Dialysis Centre Child And Adolescent Renal Service Gold Coast Private Hospital Gold Coast University Hospital Greenslopes Private Hospital Hervey Bay Hospital Ipswich Hospital John Flynn Hospital Mackay Hospital Mater Hospital Brisbane Mater Hospital Townsville Mount Isa Hospital Nambour Selangor Private Hospital Northlakes Private Dialysis Centre Pindara Renal Unit Princess Alexandra Hospital Ramsay Cairns Private Dialysis Centre Rockhampton Hospital Royal Brisbane And Women's Hospital St Andrews Hospital Toowoomba St Andrew's Ipswich - Dialysis Centre Sunshine Coast University Hospital Sunshine Coast University Private Hospital (Ramsay) Toowoomba Hospital Townsville Hospital Wesley Hospital South Australia Central Northern Adelaide Renal Flinders Medical Centre Women's and Children's Hospital Tasmania Launceston Hospital Royal Hobart Hospital Victoria Alfred Hospital Austin Hospital Bendigo Hospital Diamond Valley Dialysis Centre Eastern Health Integrated Renal Services Epworth Eastern Hospital Epworth Geelong Hospital Epworth Richmond Hospital Forest Hill Satellite Geelong Hospital Malvern Dialysis Centre Monash Medical Centre (Adults) Monash Medical Centre (Paediatric) North Melbourne Dialysis Centre Northern Health Service Melbourne Royal Children's Hospital Royal Melbourne Hospital St Vincent's Hospital Melbourne Sunshine Private Hospital Western Health Service Western Australia Fiona Stanley Hospital Perth Children's Hospital Royal Perth Hospital Sir Charles Gairdner Hospital New Zealand Auckland Hospital Christchurch Hospital Dunedin Hospital Hawkes Bay Hospital Middlemore Hospital Palmerston North Hospital Starship Children's Hospital Taranaki Hospital Waikato Hospital Waitemata Renal Service Wellington Hospital Whangarei Hospital
ACSQHC-ARCR-342	Transplant and cellular therapies	High burden cancers	Australia and New Zealand Transplant and Cellular Therapies Registry	ANZTCT	https://anztct.org.au/	Leonie Wilcox, ANZTCT, leonie.wilcox@anztct.org.au	1992	The purpose of the ANZTCT is: to collect baseline and outcome data relating to all bone marrow, peripheral blood and cord blood haemopoietic stem cell transplants and other cell therapies performed throughout Australia and New Zealand to provide data to clinicians and researchers for studies involving specific subsets of patients, or to determine the feasibility of such studies to provide data to clinicians to inform patient care to provide data to health administrators for resource planning and quality assurance purposes to participate in local and international data collections by contributing summary and outcome data to enhance the global knowledge base for these types of treatments to routinely provide systematic bench-marking data to contributing centres for safety and quality audits and to assist with accreditation requirements.	Australia and New Zealand Transplant and Cellular Therapies Limited	St Vincent’s Hospital HREC: 2019/PID11532	Feedback to contributing clinicians Shared with clinicians Provide benchmarking analysis for safety and quality audits and to assist with accreditation requirements	To be collected initially for cell therapy patients, with potential to include transplant patients in the future	Nil	https://anztct.org.au/registry/contributing-centers/ New South Wales Children's Hospital at Westmead Concord Repatriation and General Hospital Gosford Hospital John Hunter Children's Hospital Liverpool Hospital Nepean Hospital Newcastle Mater Hospital Prince of Wales Hospital Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital St Vincent's Hospital, Sydney Sydney Children's Hospital Westmead Hospital Wollongong Hospital Queensland Gold Coast University Hospital Greenslopes Private Hospital Mater Private Hospital Mater Misericordae Public Hospital Princess Alexandra Hospital Queensland Children's Hospital Royal Brisbane & Women's Hospital The Townsville Hospital Wesley Private Hospital Victoria Alfred Hospital Austin Hospital Box Hill Hospital Geelong Hospital Peter MacCallum Cancer Centre Royal Children's Hospital, Melbourne Royal Melbourne Hospital St Vincent's Hospital, Melbourne South Australia Flinders Medical Centre Queen Elizabeth Hospital Royal Adelaide Hospital Women and Children's Hospital Western Australia Fiona Stanley Hospital Perth Children's Hospital Royal Perth Hospital Sir Charles Gairdner Hospital Tasmania Royal Hobart Hospital Australian Capital Territory Canberra Hospital New Zealand Auckland Hospital Christchurch Hospital Palmerston North Hospital Starship Hospital Waikato Hospital Wellington Hospital
ACSQHC-ARCR-346	Cardiac healthcare, commencing with Percutaneous Coronary Intervention	Ischemic heart disease	National Cardiac Registry	NCR	https://nationalcardiacregistry.org.au/	Jasmine Pyyvaara, Project Manager, National Cardiac Registry, Monash University, info@nationalcardiacregistry.org.au	2019	The National Cardiac Registry (NCR) is a clinical quality registry that collects information on patients receiving treatment for cardiac conditions via state/territory-based cardiac registries. The purpose of the NCR is to document outcome variance and opportunities for excellence in the quality of cardiac health care across Australia. In 2021 data collection commenced across number of state/territories and as it matures the following objectives will be realised. Objectives: Use a collaborative, federated model for effective engagement, participation and support from stakeholders Provide a platform to receive State and Territory data and measure performance as determined by agreed quality indicators Transparently report on clinical, procedural and patient outcomes to clinicians, hospitals, government and community Provide national benchmarking of key quality performance measures for cardiac conditions/procedures/devices and secondary prevention The NCR will be rolled out in modules, each covering different areas of cardiac healthcare. The first module covers Percutaneous coronary intervention (PCI). The quality indicators for PCI are: Time from diagnostic electrocardiogram to PCI mediated reperfusion Time from door to PCI mediated reperfusion Peri-PCI stroke In hospital major bleeding In hospital mortality 30-day unplanned cardiac readmission rate after PCI Unplanned revascularisation within 30 days 30-day mortality after PCI Patients without contraindication discharged on lipid-lowering therapy Patients referred to cardiac rehabilitation or other secondary prevention program Proportion of patients without a clear and documented contraindication for Aspirin and/or a P2Y12 inhibitor, discharged on DAPT	National Cardiac Registry Limited	Alfred Health Ethics Committee 63109 (Local Reference: Project 59/21)	Reported in Annual Report Participating state/territory cardiac registries can access inbuilt bench-marked reports Participating state/territory cardiac registries can share reports with hospitals executives, state/territory health departments, other clinicians Shared with consumers via annual report	Nil	Nil	https://nationalcardiacregistry.org.au/participating-registries/ The NCR utilises a federated model of governance and data collection. Data is submitted to the NCR by participating cardiac registries across Australia. Currently there are cardiac registries established in the Australian Capital Territory, New South Wales, Queensland, South Australia and Victoria. Tasmania is working with Victoria’s registry to submit data. The Northern Territory and Western Australia are currently developing their registries. ACT Cardiac Outcomes Registry (ACTCOR) Coronary Angiogram Database of South Australia (CADOSA) New South Wales Cardiac Outcomes Registry (NSWCOR) Northern Territory Top End Coronary Database (NTTECD) Queensland Cardiac Outcomes Registry (QCOR) Victorian Cardiac Outcomes Registry (VCOR) Western Australia Cardiac Outcomes Registry (WACOR)
ACSQHC-ARCR-351	Out-of-Hospital Cardiac Arrest	Ischemic heart disease	Australian Resuscitation Outcomes Consortium (Aus-ROC) Australian and New Zealand Out-of-Hospital Cardiac Arrest Epistry	Aus-ROC OHCA Epistry	https://www.ausroc.org.au/epistry/	Janet Bray, Monash University, janet.bray@monash.edu	2015	The Aus-ROC OHCA Epistry aims to monitor and report on the population-based effects of changes in pre-hospital resuscitation policy and practice. Specifically, understanding regional, ambulance service and treatment factors associated with improved OHCA survival and outcomes. Population: all OHCA cases attended by Australian and New Zealand ambulance services. Outcomes: survival to hospital discharge/30 days, event survival and return of spontaneous circulation (ROSC).	Monash University	Monash University Human Ethics Committee ref: #13933	In development - reporting to contributing ambulance services Quarterly Management Committee Meetings	Nil	Nil	Australian Capital Territory ACT Ambulance Service New South Wales Ambulance New South Wales Northern Territory St John Ambulance Northern Territory Queensland Queensland Ambulance Service South Australia S.A. Ambulance Service Tasmania Ambulance Tasmania Victoria Ambulance Victoria Western Australia St John Ambulance Western Australia New Zealand St John Ambulance New Zealand Wellington Free Ambulance
ACSQHC-ARCR-353	Infertility and its treatment	Nil	Australian and New Zealand Assisted Reproduction Database	ANZARD	https://npesu.unsw.edu.au/data-collection/australian-new-zealand-assisted-reproduction-database-anzard	Jade Newman, National Perinatal Epidemiology and Statistics Unit, University of New South Wales, jade.newman@unsw.edu.au	2002	The Australia and New Zealand Assisted Reproduction Database (ANZARD) is a Clinical Quality Registry (self-reported) comprising information on all assisted reproductive technology (ART) treatment cycles and donor insemination cycles undertaken in Australian and New Zealand fertility clinics. Over 90 fertility clinics submit data to the National Perinatal Epidemiology and Statistics Unit (NPESU) each year as part of their licensing requirements under the Reproductive technology Accreditation Committee (RTAC) Code of Practice. ANZARD includes information on in vitro fertilisation (IVF) cycles, including intracytoplasmic sperm injection (ICSI) cycles using fresh and cryopreserved (frozen) embryos, and laboratory techniques such as preimplantation genetic testing and extended embryo culture. Demographic details on female and male patients, include age and infertility diagnosis and duration, parity, intending parent status etc. Treatment details include details of the ART cycles performed and treatment, pregnancy and birth outcomes. The purpose of the ANZARD collection is to inform patients, the medical community and governments about ART treatments performed in Australia and New Zealand. An ANZARD annual report is published each year as part of the Annual Report Series available on the NPESU website. Annual reports cover treatment practices, success rates and perinatal outcomes for all ART treatments performed in one calendar, along with an analysis of recent trends. ANZARD is also used to benchmark the performance of clinics nationally, and provides a rich source of data for undertaking research and informing public policy. ANZARD data is used to populate the YourIVFSuccess website (www.yourivfsuccess.com.au), a consumer facing website of IVF success rates of Australian IVF clinics and individualised patient estimates.	University of New South Wales	Jurisdictional health information arrangement	Clinic-specific feedback and benchmarking reports to Australian and NZ IVF clinics Benchmarking reports to the Reproductive Technology Accreditation Committee (RTAC) Publicly available Annual Report Reporting of IVF success rates via YourIVFSuccess website.	Nil	Nil	For a current list of all RTAC accredited IVF clinics in Australia and New Zealand, please visit https://www.fertilitysociety.com.au/code-of-practice/#copanz
ACSQHC-ARCR-355	Trauma	Trauma	WA State Trauma Registry	Nil	https://www.rph.health.wa.gov.au/Services/Trauma-Service	Lola Sikora, Trauma Program Manager, Royal Perth Hospital, lola.sikora@health.wa.gov.au	1994	The WA State Trauma Registry at Royal Perth Hospital (RPH) has been collecting data on trauma patients since August 1994 and the database now contains more than 110,000 trauma admissions. For the purposes of the Registry, trauma is defined as “an injury or wound resulting from an external force” (Miller and Keane, 1983). The criteria for inclusion into the registry are: All trauma patients who present to RPH for treatment within 7 days of their date of trauma and who were hospitalised for greater than 24 hours at RPH. All trauma-related deaths at RPH regardless of hospital length of stay. Patients who have suffered the effects of poisoning and drug overdose are excluded from the registry. The Registry population is divided into major and minor trauma admissions according to the Injury Severity Score (ISS). Major trauma admissions are those patients who have an ISS of greater than 15. An extensive dataset is collected on these patients, from the time of trauma to discharge from RPH, including pre RPH treatment. Minor trauma admissions are those patients who meet the registry inclusion criteria and have an ISS of less than 16. A limited dataset is collected on these patients. From January 2017, a moderate dataset on patients with an ISS >12 and <16 is now collected, in order to meet the reporting requirements of the Australian Trauma Registry.	Royal Perth Hospital	Quality improvement initiative - a databank of routinely collected health data.	Reported in Annual Report Shared with clinicians Shared with hospital executive Injury prevention reports	Nil	Nil	Western Australia Fiona Stanley Hospital Joondalup Health Campus Perth Children's Hospital Royal Perth Hospital Sir Charles Gairdner Hospital St John of God Midland Hospital An automated data collection process utilising administrative (ICD-10) data will soon be implemented in order to capture all Western Australian trauma admissions that do not attend hospitals participating in trauma registries.
ACSQHC-ARCR-362	Clinical cardiology and cardiac services	Ischemic heart disease	Queensland Cardiac Outcomes Registry	QCOR	https://clinicalexcellence.qld.gov.au/priority-areas/clinician-engagement/statewide-clinical-networks/cardiac	William Vollbon, Statewide Cardiac Clinical Informatics, Queensland Health, scciu@health.qld.gov.au	2014	The Queensland Cardiac Outcomes Registry (QCOR) provides detailed information on the performance of clinical cardiac care provided to patients across all Queensland public health facilities. The registry also examines outcomes across a number of specialty areas including, interventional cardiology, cardiac and thoracic surgery as well as cardiac electrophysiology and pacing. QCOR also collects data on the care and outcomes of patients referred to heart failure support services or undergoing a cardiac rehabilitation program.	Queensland Health	Jurisdictional health information arrangements is the mechanism for obtaining agreement by participating sites to provide information	Feedback to contributing clinicians Reported in Annual Report Contributions to national clinical registries (Australian & New Zealand Society of Cardiac & Thoracic Surgeons	30-day (Percutaneous coronary intervention) PCI follow up Cardiac rehabilitation quality of life audits	Nil	Queensland Atherton Hospital Ayr Hospital Biggenden Hospital Biloela Hospital Blackall Hospital Boonah Hospital Bowen Hospital Browns Plains Community Health Centre Bundaberg Hospital Caboolture Hospital Cairns Hospital Caloundra Hospital Capricorn Coast Hospital Charleville Hospital Charters Towers Hospital Chermside Community Health Centre Chinchilla Hospital Dalby Hospital Eidsvold Hospital Eight Mile Plains Community Health Centre Esk Hospital Gatton Hospital Gayndah Hospital Gladstone Hospital Gold Coast University Hospital Goondiwindi Hospital Gympie Hospital Health Contact Centre Hervey Bay Hospital Hughenden Hospital Inala Community Health Centre Ingham Hospital Innisfail Hospital Ipswich Hospital Kingaroy Hospital Laidley Hospital Logan Hospital Longreach Hospital Mackay Base Hospital Mareeba Hospital Maroochydore Community Health Maryborough Hospital Miles Hospital Mossman Hospital Mount Isa Hospital Mount Morgan Hospital Mundubbera Hospital Nambour General Hospital Noosa Community Health North Lakes Health Precinct Princess Alexandra Hospital Proserpine Hospital Queen Elizabeth II Jubilee Hospital Redcliffe Hospital Redland Hospital Robina Hospital Rockhampton Hospital Roma Hospital Royal Brisbane and Women's Hospital St George Hospital Stanthorpe Hospital Tara Hospital Texas Hospital The Prince Charles Hospital Toowoomba Hospital Townsville University Hospital Tully Hospital Warwick Hospital
ACSQHC-ARCR-365	Paediatric Orthopaedics	Musculoskeletal disorders	The SOHO Registry: Standardising Orthopaedic Healthcare Outcomes	SOHO	Nil	Eleanor Morris, The Children’s Hospital, Westmead, eleanor.morris@health.nsw.gov.au	2019	The aim of the SOHO registry is to collect patient reported outcome measures (PROMs) amongst children with paediatric orthopaedic conditions attending The Children's Hospital at Westmead. The outcome measures collected are tailored to the individual orthopaedic diagnoses. Currently included diagnoses are: Idiopathic Scoliosis Early-Onset Scoliosis Syndrome or Neuromuscular-related Scoliosis Charcot Marie Tooth disease Congenital Talipes Equinovarus Tarsal Coalition Lateral column lengthening Pes Cavus correction Anterior Cruciate Ligament Rupture Mensicus Tear, Osteochondritis Dissecans Discoid Mensicus Patella Dislocation Hereditary Multiple Osteochondramata Bone and Soft Tissue Tumous Leg Lengthening Perthes Disease Muccopolysacchariodosis and shoulder instability. PROMs are completed at baseline, 6 and 12 months and then on an annual basis ongoing.	The Orthopaedic Department - The Children's Hospital at Westmead	Sydney Children’s Hospital Network HREC 2018/ETH00563, 2018/STE00429	Feedback to contributing clinicians	Visual Analogue Scale Paediatric Outcomes Data Collection Instrument Non arthritic hip score International knee documentation committee-paediatric Oxford foot and ankle score-child Scoliosis research society -22revised EQ-5D/Y EOS 24 Quick DASH Paediatric Adolescent Shoulder Score	Nil	The Children’s Hospital, Westmead
ACSQHC-ARCR-369	COVID-19	Maternity	Coronavirus Health Outcomes in Pregnancy and Newborns	CHOPAN	https://chopan.psanz.com.au/chopan/	Clare Whitehead, The Royal Women's Hospital, clarew@unimelb.edu.au	2020	The CHOPAN registry aims to collect real-time data on pregnant women who are infected with the coronavirus that causes COVID-19 (SARS-CoV2) to improve our understanding of its impact on pregnancy and neonatal outcomes. This registry will provide regular feedback to clinicians and public health officials to allow evidence-based management of women and their babies with coronavirus infection. This registry was developed by Australian clinicians in collaboration with international colleagues in order to maximise its value to the global community. The aims of the registry are to: Describe the presentation and clinical course of coronavirus infection in pregnant women Assess obstetric, perinatal and neonatal outcomes after coronavirus infection Describe modes of transmission, including any cases of mother-to-child transmission Identify any factors that influence disease outcome for mother and baby including: timing and mode of delivery, breastfeeding, rooming-in/separation, the use of anti-viral treatments and supportive therapies Facilitate international collaborative efforts to improve care of women exposed to novel and emergent pathogens.	University of Melbourne	Monash Health HREC: Reference RES-20-0000-215A	Feedback to contributing clinicians Reported to State/Territory health departments Shared with medical colleges	Nil	Nil	Australian Capital Territory Mercy Health Service The Canberra Hospital New South Wales Bankstown Hospital Camperdown Hospital Fairfield Hospital Hornsby Ku-Ring-Gai Hospital Liverpool Hospital Nepean Hospital Royal Hospital For Women Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital Westmead Hospital Northern Territory Alice Springs Hospital Gove District Hospital Katherine Hospital Royal Darwin Hospital Queensland Sunshine Hospital South Australia Flinders Medical Centre Lyell Mcewin Hospital Womens and Childrens Hospital Victoria Ballarat Health Services (Base Hospital) Boxhill Hospital Frankston Hospital Monash Medical Centre - Clayton Campus The Royal Childrens Hospital The Royal Women's Hospital Werribee Hospital
ACSQHC-ARCR-371	Congenital hand and upper limb differences	Nil	Australian Hand Difference Register	AHDR	https://www.mcri.edu.au/ahdr	Joanne Kennedy, Murdoch Children's Research Institute, joanne.kennedy@mcri.edu.au	2017	The Australian Hand Difference Register (AHDR) is a database of information about children in Australia who were born with a hand and/or arm difference. The AHDR aims to: find out how many children are born with a hand/arm difference in Australia learn more about specific causes and risk factors gain information to help plan services identify possible participants for future research The information gathered will contribute to future improvements in the health and well being of children born with hand differences by identifying clinical pathways and if possible, preventative strategies.	Murdoch Children's Research Institute	HREC/17/RCHM/4, The Royal Children’s Hospital HREC	Feedback to contributing clinicians Shared with clinicians Reported in Annual Report	Nil	Nil	New South Wales The Children’s Hospital at Westmead Sydney Children’s Hospital Randwick Queensland Queensland Children’s Hospital Gold Coast University Hospital (governance approval pending) South Australia Women’s and Children’s Hospital Adelaide Western Australia Perth Children’s Hospital
ACSQHC-ARCR-373	Renal Cell Carcinoma treated with Stereotactic Ablative Radiotherapy (SABR)	Nil	International Radiosurgery Oncology Consortium for Kidney Prospective Registry	IROCK Registry	Nil	Associate Professor Shankar Siva, Peter MacCallum Cancer Centre, shankar.siva@petermac.org	2022	Although surgery is the standard of care for primary renal cell carcinoma (RCC), many patients in this population have comorbidities that may preclude them from having the necessary procedure. The International Radiosurgery Oncology Consortium for Kidney (IROCK) will collect high quality, prospective data from patients who undergo stereotactic ablative radiotherapy (SABR) for primary RCC. The primary purpose of the IROCK registry is to evaluate oncological outcomes after delivery of SABR to primary kidney cancer. This will assist oncologists and future patients make evidence-based decisions about treatment options. Findings may also change the standard of care of patients for patients with RCC. The IROCK registry collects information about patient characteristics and medical history; clinical data relating to cancer diagnosis and staging; renal score and function; details of the SABR treatment administered; organ at risk and toxicity information; patterns of failure data and documentation of endpoints. Follow-up data is collected every 6 months after SABR. The registry will also document novel combinations of systemic targeted agents and/or immunotherapies to establish their ability to enhance the effectiveness of the SABR technique. Given the projected increase in RCC globally, a better understanding of treatment options is pressing. The potential of SABR as a suitable treatment option for RCC in several patient cohorts therefore warrants further research, making the collection of data via a high quality, international, prospective registry essential.	Peter MacCallum Cancer Centre	Peter MacCallum Cancer Centre HREC/80137/PMCC-2021	Results of the data analysis will be published in medical journals as appropriate	Nil	Nil	Victoria Peter Maccallum Cancer Centre International Canada Juravinski Cancer Centre & McMaster University London Regional Cancer Program McGill University Sunnybrook Health Sciences Centre & University of Toronto The Ottawa Hospital Cancer Centre Germany Cyberknife Center, University of Munich Hospitals Japan University of Yamanashi Netherlands Amsterdam University Medical Centre United States of America Beth Israel Deaconess Medical Center Case Comprehensive Cancer Center Geisinger Medical Center Penn State Health The Kidney Cancer Research Alliance (KCCure) University of Texas - Southwestern University of Washington
ACSQHC-ARCR-380	Huntington's Disease	Nil	Huntington's Disease Network of Australia Map-HD Registry	HDNA Map-HD Registry	hdna.com.au	Julie Stout, Monash University, Julie.Stout@monash.edu	2021	The Map-HD Registry is a collection of data about people in Australia who are affected by Huntington’s disease (HD). All family members of people affected by HD are encouraged to register, whether or not they are at risk themselves. The Map-HD Registry is needed to: Map where families affected by HD live in Australia, so that care, services, and funding can be directed to the right locations Establish how many people are affected by HD, and in what ways, to support requests to the Commonwealth and local governments for improved funding of care and new treatments; and Provide essential information needed for future HD treatments to be approved in Australia and listed on the Pharmaceutical Benefits Scheme (PBS).	Monash University (Stout Lab)	Monash Health HREC Reference: RES-20-0000-887A	Reported in Annual Report - shared with all HD clinics and HD state associations.	Nil	Nil	New South Wales Westmead (access only) Queensland Royal Brisbane & Women's Hospital South Australia Flinders Medical Centre Royal Adelaide Hospital Victoria Calvary Health Care Bethlehem Monash University (registry management site only) Royal Melbourne Hospital Western Australia North Metropolitan Health Service, Mental Health, Public Health and Dental Services, Neurosciences Unit WA
ACSQHC-ARCR-387	Systemic Lupus Erythematosus	Musculoskeletal disorders	Australian Lupus Registry and Biobank	ALRB	https://www.lupusregistry.com/	Alberta Hoi, Monash University, Alberta.hoi@monash.edu	2015	Systemic Lupus Erythematosus (SLE) is a heterogeneous, systemic, autoimmune condition, typically associated with autoimmunity to nuclear antigens. The predominant population affected are women of child-bearing potential, though children, older females and males are also affected. SLE patients experience increased morbidity and mortality due to their disease and the side effects of available treatment options including corticosteroids and immunosuppressive treatments. The Australian Lupus Registry and Biobank (ALRB) is a disease registry and decentralised biobank that aims to provide a platform for lupus specialists and researchers to collaborate in the collection of clinical data and tissue from SLE patients in Australia and carry out associated studies to further understand the pathogenesis and impact of SLE, including studies assessing health outcomes and quality of care. The comprehensive data collection includes baseline information on patient demographics, serology, SLE classification criteria and comorbidites; routine disease monitoring information including medications, medical test results and SLE disease activity; and, annual monitoring of outcomes including medical events of interest, damage accrual and health-related quality of life. Biospecimens collected include whole blood for DNA extraction, Paxgene-stabilised whole blood for RNA analyses and serum samples for protein expression studies. Fresh blood collections of up to 60 mL of blood at any one time point are also possible for ethically-approved studies.	Monash University	Monash Health HREC Project Reference 14262A	Feedback to contributing clinicians Publications in medical journals	Adult patients: SF (Short Form)-36v2 Health Survey Multi-dimensional Health Assessment Questionnaire Work Productivity and Activity Impairment Questionnaire Lupus Impact Tracker Paediatric patients: Pediatric Quality of Life Inventory (Core and Rheumatology Modules)	Nil	Australian Capital Territory Canberra Hospital New South Wales Liverpool Hospital North Shore Hospital Northern Territory Royal Darwin Hospital Royal Alice Springs Hospital Queensland Redcliffe Hospital Royal Brisbane & Women's Hospital South Australia Flinders Medical Centre The Queen Elizabeth Hospital The Royal Adelaide Hospital Victoria Austin Health - Austin Hospital Monash Children's Hospital Monash Medical Centre - Clayton Campus Royal Melbourne Hospital - City Campus St Vincent's Hospital (Melbourne) Ltd
ACSQHC-ARCR-388	Surgical intervention for arthritis, tendon or ligament rupture of the shoulder, hip and knee	Musculoskeletal disorders	QEII Jubilee Hospital Shoulder, Hip Arthroplasty and Knee Surgery registry	SHArKS	Nil	Lorenzo Calabro, Queen Elizabeth II Jubilee Hospital, Metro South Health, QLD Health, lorenzo.calabro@health.qld.gov.au	2017	The Queen Elizabeth II Jubilee Hospital’s Shoulder, Hip Arthroplasty and Knee Surgery (SHArKS) registry began in 2017 as a single-surgeon database, and has evolved to include patients presenting to one of several participating surgeons in the department of orthopaedics. The aim of the SHArKS registry is to facilitate the collection of patient-reported outcomes and compilation of data from across the entire department, to evaluate the current standard of care and inform evidence-based changes in clinical practice.	Department of Orthopaedics, QEII Jubilee Hospital, Metro South Health, Queensland Health	Metro South Health HREC/16/QPAH/732	Feedback to contributing clinicians Shared with other clinicians Reported in Annual Report Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis	Each registry cohort completes up to eight of the following PROMs, depending on presenting pathology: EuroQol 5-Dimension (EQ-5D) Veteran’s Rand 12 item score (VR-12) Constant-Murley Score VAS Pain; SANE Function Western Ontario Osteoarthritis Score (WOOS) Oxford shoulder score (OSS) Oxford shoulder instability score (OSIS) Western Ontario Rotator Cuff (WORC) Score Oxford Knee Score (OKS) Tegner Activity Scale Shoulder Activity Scale (Brophy et al. 2005) International Knee Documentation Committee Subjective Score (IKDC) Oxford Hip Score (OHS) Treatment Satisfaction MODEMS Patient Expectation Scale ACL Return to Sport Index (ACL-RSI) Return to Sport/activity Expectations (Webster and Feller, 2019) Tampa Scale of Kinesiophobia - 11 (TSK-11)	Nil	Queensland Mater Private Hospital Springfield Queen Elizabeth II Jubilee Hospital
ACSQHC-ARCR-392	Paediatric cardiac catheter patients	Nil	The Cardiac Catheter Outcomes Registry of Australia and New Zealand	CCORANZ	Nil	Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au	The registry is not yet operational and is currently being developed	This registry has been developed to collect prospective data regarding outcomes following cardiac catheterisation in Australia and New Zealand. The goal of the registry is to use the comprehensive data collected to evaluate performance and identify areas for improvement.	Queensland Health	Children’s Health Queensland Human Research Ethics Committee Approval ID HREC/2021/QCHQ/71922	Planned: Feedback to contributing clinicians Reported in Annual Report Shared with consumers Shared with hospital executive Shared with medical colleges Shared with other clinicians	Nil	Nil	New South Wales The Children's Hospital, Westmead Queensland Queensland Children's Hospital South Australia Women’s And Children’s Hospital Victoria The Royal Children’s Hospital Western Australia Perth Children’s Hospital
ACSQHC-ARCR-396	Orthopaedic Trauma	Trauma	Victorian Orthopaedic Trauma Outcomes Registry	VOTOR	https://www.monash.edu/medicine/sphpm/votor/home	Melissa Hart, Monash University, Melissa.hart@monash.edu	2003	The Victorian Orthopaedic Trauma Outcomes Registry was initially funded as a pilot project by the Victorian Trauma Foundation in 2003. It first started as a collaborative project between The Alfred, Royal Melbourne Hospital and the Department of Epidemiology and Preventive Medicine at Monash University. The registry was expanded to include the Geelong Hospital and the Northern Hospital in 2007. It operates as a sentinel site registry and is a comprehensive and robust monitoring system for orthopaedic trauma in Victoria. The overarching aims of the Victorian Orthopaedic Trauma Registry are to: Monitor orthopaedic injury management, treatment, approaches and outcomes Identify variations in orthopaedic clinical practice Identify specific injuries, procedures and patient populations at risk of poor outcomes Monitor the use of orthopaedic implants and their outcomes	Monash University	Department of Health and Human Services HREC 11-14	Reported in Annual Report	Return to work/ study Pain (level, region and side) World Health Organization Disability Assessment Scale (WHODAS) Global outcome assessment Extended Glasgow Outcome Scale (GOS-E) EuroQOL Group EQ-5D-5L (5 level) EQ_VAS	Nil	Victoria The Alfred Box Hill Hospital (Eastern Health) Northern Hospital The Royal Melbourne Hospital University Hospital Geelong
ACSQHC-ARCR-397	Acquired and Inherited Bone Marrow Failure Syndromes	Nil	Aplastic Anaemia and other Bone Marrow Failure Syndromes Registry	AAR	www.monash.edu/medicine/sphpm/registries/aar https://aaregistry.org.au/	Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu; aar@monash.edu	2012	The Aplastic Anaemia Registry was established in 2012, through a collaboration between the Transfusion Research Unit in Monash University’s School of Public Health and Preventive Medicine and partner hospitals, clinicians and patients. Registry operations are overseen by a multidisciplinary national steering committee and is supported by the Maddie Riewoldt’s Vision Foundation. The Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry is a clinical quality registry (self-reported) collecting health information on adult and paediatric patients diagnosed with a bone marrow failure syndrome. Data collection is performed at baseline following diagnosis at 6-months and then annually and collects information on the following: Health at diagnosis, patient demographics, co-morbidities and performance status Clinical presentation and disease characteristics (disease type, severity and laboratory diagnostic data) Therapy decisions, (drug/dose of treatment, number of lines of therapy, reasons for alteration or discontinuation) Outcomes (such as complications of disease and therapies and survival). There are currently 40 Australian hospitals participating in the registry with over 360 participants registered since the first patient data was entered in 2013. The registry provides research infrastructure for the DIAAMOND clinical trial, IBMDx study and the Australian Marrow Failure Biobank.	Monash University	NMA Lead HREC, Monash Health and Western Australia, Child and Adolescent Health Service HREC; HREC approval reference: CF12/0423 - 2012000185	Reported in Annual Report	Nil	Nil	New South Wales Calvary Mater Hospital Newcastle Canberra Hospital Children's Hospital at Westmead Concord Hospital Gosford Hospital John Hunter Children's Hospital Liverpool Hospital Nepean Hospital Prince of Wales Hospital Royal North Shore Royal Prince Alfred Hospital St George Hospital St Vincent's Hospital - Sydney Sydney Children's Hospital Westmead Hospital Wollongong Hospital Queensland Princess Alexandra Hospital Queensland Children's Hospital Royal Brisbane and Women's Hospital Townsville Hospital South Australia Flinders Medical Centre Queen Elizabeth Hospital Royal Adelaide Hospital Women's and Children's Hospital Adelaide Tasmania Royal Hobart Hospital Victoria Alfred Hospital Austin Hospital Box Hill Hospital Geelong Hospital Monash Medical Centre Peter MacCallum Cancer Centre Royal Children's Hospital Melbourne Royal Melbourne Hospital St Vincent's Hospital - Melbourne Western Hospital Western Australia Fiona Stanley Hospital Perth Children's Hospital Royal Perth Hospital Sir Charles Gairdner Hospital
ACSQHC-ARCR-398	Prostate Cancer	High burden cancers	Prostate Cancer Outcomes Registry - Queensland	PCOR-QLD	https://prostatecancerregistry.org/	Heather Day, Clinical Registry Manager, Queensland University of Technology, pcorqld@qut.edu.au	2016	PCOR-QLD focuses on describing patterns of care following a diagnosis of prostate cancer, monitoring quality of delivered care and whether it is in line with evidence-based guidelines. Population captured: PCOR-QLD is a population-based registry currently capturing 85 percent of all newly diagnosed cases of prostate cancer in Queensland. Outcomes measured: positive margin rate post prostatectomy, documentation of clinical stage, PSA recorded pre-diagnosis, post prostatectomy and 12 months post treatment, advanced disease and appropriate use of active surveillance, patient-reported quality of life measurements at 12 months post treatment or diagnosis (if no treatment has occurred). Notifications of prostate cancer are obtained from the Queensland Cancer Register for participating institutions and clinicians. Data is collected from public hospital medical records and private clinician's medical records. Data is collected by using a secure web-based portal. Data is collated and bench-marking reports are sent out every six months to participating institutions and clinicians.	Monash University	MetroSouth HREC:HREC/15/QPAH/573	Reported in Annual Report Shared with clinicians Shared with hospital executive	The Expanded Prostate Cancer Index Composite (EPIC-26) Short Form - a Quality of Life questionnaire.	Nil	https://prostatecancerregistry.org/whos-involved/ Queensland Bayside Urology - Private Bowes Urology Brisbane Private Hospital Brisbane Prostate Clinic Brisbane Urology Clinic Buderim Private Hospital Cairns Hospital Coastal Urology Clinic Dr Kenneth P'ng Private Practice Dr Kenny Rao Urology East Coast Urology Genesis Care Gold Coast Private Hospital Gold Coast University Hospital Gold Coast Urology Greenslopes Private Hospital Greenslopes Urology Clinic Ipswich Hospital Ipswich Urology Jamie Reynolds Urology Jo Schoeman Urology Mackay Base Hospital Mackay Urology Mater Hospital Brisbane Mater Hospital Mackay Mater Private Hospital Townsville Northern Urology Northern Urology Clinic Oceanside Urology Patrick Dunne Urology Pioneer Urology Princess Alexandra Hospital QE II Jubilee Hospital Queensland Prostate Clinic Redcliffe Hospital Rockhampton Hospital Royal Brisbane and Women’s Hospital St Andrew's Hospital Toowoomba St Vincent's Private Hospital Northside Sunshine Coast Urology Clinic The Prostate Clinic (Gold Coast) Toowoomba Base Hospital Toowoomba Urology Townsville Hospital Townsville Urology UroBriz UroMed Watson Urology Wesley Hospital Wesley Urology Clinic
ACSQHC-ARCR-403	Radiation Treatment	Nil	Australian Particle Therapy Clinical Quality Registry	ASPIRE	https://sahmri.org.au/research/programs/registry-centre/groups/australian-particle-therapy-clinical-quality-registry-aspire	Kelly Skelton, The Australian Bragg Centre for Proton Therapy and Research, kelly.skelton@sahmri.com	2022	The Australian Particle Therapy Clinical Quality Registry (ASPIRE) was initiated to collect participant data to describe the patterns of care for patients receiving conventional Xray therapy (Photon) versus Proton Beam therapy (PBT) as part of ongoing government funding of PBT. Current Medicare Benefits Schedule (MBS) items exist for some paediatric, adolescent and rare adult tumours to be treated with PBT. A lack of evidence reporting the long-term side effects of photon versus PBT means there is a recognised disparity in equity of access to PBT for other tumour types. The ASPIRE registry is a prospective, observational, longitudinal study of paediatric, adolescent, young adult (AYA) and rare adult tumour patients from a select group of tumour streams treated with radiotherapy, being those that are in the MBS approved list. The primary objective of the registry is to describe the long-term effects and disease control outcomes with a specific focus on side effects patients experience from their radiation treatment and the economic savings by improving radiotherapy side effects.	South Australian Health and Medical Research Institute (SAHMRI) and The Australian Bragg Centre for Proton Therapy and Research (ABCPTR)	Women’s and Children’s Hospital HREC, 2021/HRE00394	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executives Shared with consumers Shared with medical colleges Reported to State/Territory health departments Reported in Annual Report Reported in other public reports	Intention is to include this in the future	Intention is to include this in the future	Australian Capital Territory Canberra Hospital Northern Territory Alan Walker Cancer Care Centre South Australia ICON Cancer Care Centre - Noarlunga, Tennyson Centre, Windor Gardens The Royal Adelaide Hospital Victoria Monash Children's Hospital Western Australia Sir Charles Gairdner Hospital
ACSQHC-ARCR-406	Cardio thoracic surgery	Ischemic heart disease	Australian and New Zealand Society of Cardiac and Thoracic Surgeons Database Program	ANZSCTS Database	https://anzscts.org/database/	Lavinia Tran, Monash University, lavinia.tran@monash.edu	2001	The ANZSCTS Database Program records details of all adult cardiac surgical procedures performed in participating hospitals in Australia and New Zealand. It has complete coverage of all public hospitals in Australia and a large majority of private hospitals. The Program has established a quarterly peer review and monitoring process which measures and benchmarks key performance indicators in cardiac surgery including: mortality, stroke, new renal insufficiency, bleeding and deep sternal would infection. The program also publishes comprehensive annual reports describing the activities and outcomes of participating sites in a comparative de-identified format.	Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS)	262/09, Alfred Health Ethics Committee	Feedback to contributing clinicians; Hospitals and surgeons have access to their own data via the online web portal Shared with clinicians Reported in Annual Report Reported in other public reports Shared with hospital executive Shared with medical colleges Reported to State/Territory health departments	Nil	Nil	Western Australia Fiona Stanley Hospital Sir Charles Gairdner Hospital St John of God Hospital (Subiaco) Mount Hospital South Australia Flinders Medical Centre Royal Adelaide Hospital Ashford Hospital Flinders Private Victoria Austin Health Royal Melbourne Hospital Monash Medical Centre St Vincent's Hospital University Hospital Geelong The Alfred Epworth Richmond Epworth Eastern Cabrini Health Jessie McPherson Private Peninsula Private Warringal Private Knox Private Melbourne Private Queensland Prince Charles Hospital Princess Alexandra Hospital Gold Coast University Townsville Hospital John Flynn Private Greenslopes Private Sunshine Coast University Private New South Wales John Hunter Hospital Prince of Wales Hospital Westmead Hospital St George Hospital St Vincent's Hospital Liverpool Hospital Royal North Shore Hospital Royal Prince Alfred Hospital Lake Macquarie Private St George Private Westmead Private Strathfield Private Newcastle Private Norwest Private Prince of Wales Private Northern Beaches Hospital Australian Capital Territory Canberra Hospital National Capital New Zealand Auckland Hospital
ACSQHC-ARCR-416	Neonatology	Neonatal critical care	Australian and New Zealand Neonatal Network	ANZNN	www.anznn.net	Sharon Chow, University of New South Wales Sydney, anznn@unsw.edu.au	1995	The Australian and New Zealand Neonatal Network (ANZNN) is a collaborative network that monitors the care of high risk newborn infants by pooling data to provide quality assurance for this resource consuming care. The Network was established in 1994 under the recommendation of the National Health and Medical Research Council's (NHMRC) Expert Panel on Perinatal Morbidity. Since its establishment the Network has developed a minimum data set and implemented a data collection that monitors the mortality and morbidity of infants admitted to neonatal intensive care units across Australia and New Zealand. Every neonatal intensive care unit (NICU) in the two countries has been contributing data since inception. Today, participation extends to every special care unit in New Zealand, and an increasing number of Australian special care units. Every year, over 12,000 newborns are admitted to a participating neonatal unit in Australia and New Zealand and meet one or more of the following ANZNN registration criteria: Born at less than 32 weeks gestation, or Weighed less than 1,500 grams at birth, or Received assisted ventilation including intermittent positive pressure ventilation (IPPV) or continuous positive airways pressure (CPAP) or high flow nasal cannulae for four or more consecutive hours, or died while receiving mechanical ventilation prior to four hours of age, or Received major surgery (surgery that involved opening a body cavity), or Received therapeutic hypothermia.	Australian and New Zealand Neonatal Network	NSW Population & Health Services Research Ethics Committee (HREC/09/CIPHS/48) ACT Health HREC (ETH.11.09.1009) Child and Adolescent Health Service HREC (1767EP) Mater Health Services HREC (HREC/14/MHS/11) Mercy Health HREC (HREC R09/46) HREC of Northern Territory Department of Health and Menzies School of Health Research (09/100) Royal Brisbane & Women's Hospital HREC (HREC/09/QRBW/313) Royal Children's Hospital HREC (29130) Royal Women's Hospital HREC (09/52) Monash Health HREC (09315B) Townsville Hospital and Health Service (HREC/09/QTHS/122) Women's and Children's Health Network (HREC/2244/02/2019) Health and Disability Ethics Committees, NZ (MEC/10/13/EXP)	Feedback to contributing clinicians Reported in Annual Report	Nil	Nil	Australian Capital Territory The Canberra Hospital New South Wales Blacktown Hospital Campbelltown Hospital Gosford Hospital John Hunter Children’s Hospital Liverpool Hospital Manning Rural Referral Hospital (Taree) Nepean Hospital Royal Hospital For Women Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital Sydney Children's Hospital Tamworth Rural Referral Hospital The Children's Hospital At Westmead The Maitland Hospital Wagga Wagga Rural Referral Hospital Westmead Hospital Wollongong Hospital Northern Territory Alice Springs Hospital Royal Darwin Hospital Queensland Bundaberg Hospital Cairns Base Hospital Gold Coast University Hospital Logan Hospital Mackay Base Hospital Mater Mothers’ Hospital Redcliffe Hospital Royal Brisbane & Womens Hospital Sunshine Coast University Hospital The Townsville Hospital South Australia Flinders Medical Centre Lyell McEwin Hospital Womens And Childrens Hospital Tasmania Royal Hobart Hospital Victoria Mercy Hospital For Women Monash Medical Centre - Clayton Campus Royal Children's Hospital Royal Women's Hospital Sunshine Hospital The Northern Hospital Western Australia King Edward Memorial Hospital Perth Children’s Hospital New Zealand Auckland City Hospital Christchurch Women's Hospital Dunedin Hospital Middlemore Hospital Waikato Hospital Wellington Women's Hospital Taranaki Base Hospital Tauranga Hospital Rotorua Hospital Timaru Hospital Nelson Hospital Whanganui Hospital Southland Hospital Hutt Hospital Gisborne Hospital Whangarei Hospital Palmerston North Hospital Whakatane Hospital Hawkes Bay Hospital Wairau Hospital North Shore Hospital Waitakere Hospital
ACSQHC-ARCR-420	Prostate Cancer	High burden cancers	Prostate Cancer Outcomes Registry Australian Capital Territory	PCOR-ACT	https://prostatecancerregistry.org/	Mirka Smith, Epidemiology Section, Preventive and Population Health, ACT Health Directorate, mirka.smith@act.gov.au	2016 (includes men diagnosed from 1 July 2015)	The PCOR-ACT is the ACT branch of the PCOR-ANZ research project. The aim of the PCOR-ANZ is to improve the quality of care provided to men with prostate cancer. All men diagnosed with and/or treated for prostate cancer in the ACT who are eligible to take part in the registry are invited to participate. Information from the registry will be used to monitor the care provided to men with prostate cancer including type(s) of treatment, related complication(s), and both short- and longer-term outcomes of care. This information will be used to help identify whether any gaps exist in the service provision for men with prostate cancer.	ACT Health Directorate	ACT HREC ETH. 9.15.178 and Calvary HREC 28-2015	Reported in Annual Report Shared with hospital executive Shared with other clinicians	EPIC-26	Nil	Australian Capital Territory Barton Private Hospital Calvary Bruce Public Hospital Calvary Bruce Private Hospital Calvary John James Hospital The Canberra Hospital Canberra Private Hospital National Capital Private Hospital
ACSQHC-ARCR-432	Lung cancer	High burden cancers	Victorian Lung Cancer Registry	VLCR	https://vlcr.org.au	Robert Stirling, Monash University, r.stirling@alfred.org.au Please cc Margaret.brand@monash.edu and med-vlcr@monash.edu	2011	Despite recent improvements in diagnosis and treatment, prognosis for lung cancer remains poor, with a 5-year survival of just 17% and it continues to be the biggest contributor to Australia’s overall cancer burden, as calculated by disability-adjusted life years. The Victorian Lung Cancer Registry (VLCR) is a CQR that captures real-world data for approximately 85% of all patients newly diagnosed with lung cancer in Victoria. The VLCR has continued to expand over the past 8 years and in 2019, the VLCR will collect clinical data care from diverse institutions including public metropolitan hospitals (n=27), private metropolitan hospitals (n=16), public regional hospitals (n=9) and private regional hospitals (n=8). Purpose: The VLCR aims to identify and reduce unwarranted variation in lung cancer care and to drive continued improvement in the quality of care provided to patients. This registry provides bench-marked risk-adjusted reports to participating sites, reflecting site performance against clinical quality indicators reflecting agreed best practice. Key to the success of the VLCR is the peer reviewed bench-marked data, which is used to motivate change in both institutional and clinical practice. Population: The VLCR includes all subjects with newly diagnosed Non Small Cell and Small Cell Lung Cancer. Outcomes: the VLCR provides 22 measures including time to first treatment, mortality after treatment (surgery and chemotherapy), presentation at multi-disciplinary meetings (MDMs), use of supportive care measures (supportive care screening) and referral to palliative care.	Monash University	HREC/16/Alfred/84	Feedback to contributing clinicians via site Principal Investigator, the VLCR reports are de-identified for treating clinician Shared with clinicians Reported in Annual Report Reported in other public reports Shared with consumers Shared with hospital executive Reported to State health department	Patient Reported Outcome Measures will be collected in 2020. These are assessments of overall health and quality of life as reported by patients at specific time points after diagnosis.	Patient Reported Experience Measures will be collected in 2020.	Victoria Alfred Health (Alfred Hospital, Caulfield, Sandringham) Austin Health (Austin Health, Heidelberg repat, Royal Talbot, Olivia-Newton John Cancer Centre) Eastern Health (Angliss, Box Hill, Maroondah, Peter James) Monash Health (Monash Medical Clayton, Casey, Dandenong, Moorabbin) Northern Health Peninsula Health (Frankston, Rosebud) Peter MacCallum Cancer Centre Royal Melbourne Hospital (Royal Park, City Campus) St Vincent’s Public (St Vincent’s Public, Caritas, St Georges) Western Health (Footscray, Sunshine, Williamstown) Cabrini Health (Cabrini Malvern, Brighton, Prahran, Elsternwick, Hopetoun) Epworth Health (Richmond, Eastern, Freemasons, Geelong, Brighton, Camberwell St Vincent’s Private (Fitzroy, East Melbourne) Genesis Care (Frankston, Epping, Ringwood) Albury Wodonga Health Ballarat Hospital Barwon Health (Geelong Hospital) Bendigo Health Goulburn Valley Health Latrobe Hospital South West Healthcare (Warrnambool, Portland, Hamilton) Ramsay Health (Peninsula, Mildura, Border Medical Oncology) St John Of God (Geelong, Ballarat, Bendigo, Warrnambool, Berwick)
ACSQHC-ARCR-433	Primary Liver Cancer (Hepatocellular carcinoma)	Nil	Upper Gastrointestinal Cancer Registry – Primary Liver Module	UGICR – Primary Liver Module	https://ugicr.org.au/	Elysia Greenhill, Monash University, ugicr@monash.edu	2021	The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The primary liver module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the liver, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.	Monash University	National Mutual Acceptance Monash Health HREC: Reference 15482A Aboriginal Health and Medical Research Council of New South Wales HREC: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611	Planned Reported in Annual Report Shared with clinicians Shared with hospital executive	PROMs is a future endeavour of this module.	PREMs is a future endeavour of this module.	National rollout planning underway
ACSQHC-ARCR-435	Cardiology, screening	Ischemic heart disease	Australasian Registry of Electrocardiograms in National Athletes	ARENA	https://www.sydney.edu.au/medicine-health/our-research/research-centres/the-arena-project.html	Dr Jessica Orchard, The University of Sydney, jessica.orchard@sydney.edu.au	2023	The Australasian Registry of Electrocardiograms in National Athletes (ARENA) is a clinical quality registry (self-reported). ARENA collects cardiac screening data for athletes over the age of 16 years, including ECGs and results of other cardiac tests from sporting organisations in Australia and New Zealand. It is led by researchers at the University of Sydney, in collaboration with other national and international experts, and based at the South Australian Health and Medical Research Institute (SAHMRI) Registry Centre. ARENA was launched in 2023, initially in Australia, with New Zealand to follow as funding allows. All sporting organisations conducting cardiac screening of athletes (including ECG) are eligible to provide data. Outcomes and diagnoses will be monitored regularly. ARENA will provide a long-term international data repository to improve our understanding of ECG interpretation, cardiac screening and diagnoses, and the rates of major cardiac events in screened athletes. A unique aim is to address important evidence gaps in under-represented athlete groups, specifically female athletes and Indigenous populations. Results will inform policy and guidelines. The overall aim is to improve the quality of their cardiac screening programs and provide better cardiac care for young athletes.	The University of Sydney	Ethics reference: 2023/551, University of Sydney Human Research Ethics Committee	Feedback to contributing clinicians Shared with other clinicians Shared with consumers Shared with medical colleges Reported in Annual Report Reported in other public reports Shared with clinicians and sporting organisations - Reported in annual report (deidentified, aggregate data) - Presented at conferences and open-access journal articles (deidentified, aggregate data)	Nil	Nil	Sporting organisations that undertake cardiac screening of athletes.
ACSQHC-ARCR-436	Surgical Mortality	Nil	Australia and New Zealand Audit of Surgical Mortality	ANZASM	https://www.surgeons.org/research-audit/surgical-mortality-audits	Helena Kopunic, Royal Australasian College of Surgeons, ANZASM.RACS@surgeons.org	2001	The Australian and New Zealand Audit of Surgical Mortality (ANZASM) is a group of regionally based surgical patient mortality audits identified as ACTASM (Australian Capital Territory), CHASM (NSW), NTASM (Northern Territory), QASM (Queensland), SAASM (South Australia), TASM (Tasmania), VASM (Victoria) and WAASM (Western Australia). The ANZASM is managed by the Royal Australasian College of Surgeons (RACS). Each of the regionally based audits is under the governance of the ANZASM, with the exception of the Collaborating Hospitals Audit of Surgical Mortality (NSW) which is managed by the NSW Clinical Excellence Commission and co-governed in collaboration with RACS. The ANZASM provides an independent peer-review mechanisms for surgeons, anaesthetists, gynaecologists, radiologists, ophthalmologists and oral and maxillofacial surgeons relating to patient deaths occurring in a hospital where: (a) the patient was under the care of a surgeon (surgical admissions), whether or not an operation was performed; or (b) the patient was under the care of a physician (medical and non- surgical admission) and there was surgical intervention. The ANZASM includes, but is not limited to: (a) notification of death by surgeon, anaesthetist, gynaecologist, radiologist, ophthalmologist, oral and maxillofacial surgeon, hospital or health system; (b) completion and review of relevant case form; (c) report to treating surgeon, anaesthetist, gynaecologist, radiologist, ophthalmologist, or oral and maxillofacial surgeon by assessing surgeon; (d) public reporting on aggregated data; (e) strategic and national review by the ANZASM Steering Committee; and (f) the making of recommendations and monitoring of the implementation of those recommendations.	Royal Australasian College of Surgeons	Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973	Feedback to contributing clinicians Shared with hospital executive Reported to State/Territory health departments Reported in Annual Report	Nil	Nil	Australian Capital Territory Barton Private Hospital Calvary Bruce Private Hospital Calvary John James Hospital Calvary Public Hospital Canberra Hospital Canberra Private Hospital Capital Day Surgery National Capital Private Hospital War Memorial Hospital New South Wales Albury Wodonga Health - Albury Campus Armidale and New England Hospital Ashbrooke Cosmetic Surgery Auburn Hospital Ballina District Hospital Balmain Hospital Balranald District Hospital Bankstown / Lidcombe Hospital Barraba Multi Purpose Service (Hospital) Batemans Bay Hospital Batemans Bay District Hospital Bathurst Base Hospital Bathurst Private Hospital Bega District Hospital Bega - South East Regional Hospital Bellingen River District Hospital Belmont District Hospital Berkeley Vale Private Hospital Bingara Hospital Blacktown and Mount Druitt Hospital Blayney Hospital Blue Mountains District ANZAC Memorial Hospital Bombala Hospital Bondi Junction Private Hospital Bourke District Hospital Bourke Street Health Service Bowral and District Hospital Braeside Hospital Brewarrina Hospital and Health Service Brisbane Waters Private Hospital Broken Hill Hospital Bulli District Hospital Byron District Hospital Calvary Health Care Kogarah Calvary Health Care Riverina Calvary Mater Newcastle Hospital Camden Hospital Campbelltown Hospital Campbelltown Private Hospital Canowindra Soldiers Memorial Hospital Canterbury Hospital Casino and District Memorial Hospital Cessnock Hospital Cobar District Hospital Coffs Harbour Base Hospital Coledale Hospital Collarenebri Multi Purpose Service Concord Hospital Condobolin District Hospital Cooma Hospital Coonabarabran Health Service Coonamble Multipurpose Service Cootamundra Hospital Coraki Campbell Health One Cowra District Hospital Crookwell District Hospital Dalcross Private Hospital David Berry Hospital Dorrigo Multipurpose Service Dubbo Base Hospital Dubbo Private Hospital Dudley Private Hospital Dunedoo Health Service Dungog Hospital Fairfield Hospital Figtree Private Hospital Forbes District Hospital Forster Private Hospital Glen Innes District Hospital Gloucester Soldiers' Memorial Hospital Gosford Hospital Gosford Private Hospital Goulburn Base Hospital Grafton Base Hospital Greenwich Hospital Grenfell Multi Purpose Service Griffith Base Hospital Gulgong Health Service Gundagai District Hospital Gunnedah District Hospital Hawkesbury Private Hospital Hillston Multi Purpose Service Hirondelle Private Hospital Hornsby Ku-Ring-Gai Hospital Hunter Valley Private Hospital Inverell District Hospital John Hunter Children's Hospital John Hunter Hospital Kareena Private Hospital Kempsey District Hospital Kiama Hospital Kurri Kurri District Hospital Kyogle Memorial Hospital Kyogle Multi-Purpose Service Lady Davidson Private Hospital Lake Macquarie Private Hospital Leeton District Hospital Lightning Ridge Multi Purpose Service Lingard Private Hospital Lismore Base Hospital Lithgow Hospital Liverpool Hospital Longueville Private Hospital Macksville District Hospital Maclean District Hospital Macquarie University Hospital Maitland Hospital Maitland Medical Centre Maitland Private Hospital Manilla Hospital Manly District Hospital Manly Waters Private Hospital Manning Base Hospital Mater Hospital, North Sydney Mayo Private Hospital, Taree Mercy Health Service, Young Milton Ulladulla Hospital Molong District Hospital Mona Vale District Hospital Moree District Hospital Moruya District Hospital Mount Druitt Hospital Mount Pleasant Medical Centre Mount Wilga Private Hospital Mudgee District Hospital Mullumbimby Hospital Murwillumbah District Hospital Muswellbrook District Hospital Narrabri District Hospital Narrandera District Hospital Nepean Hospital Nepean Private Hospital Newcastle Private Hospital North Shore Private Hospital Northern Beaches Hospital Norwest Private Hospital Nowra Private Hospital Orange Base Hospital Pambula District Hospital Parkes District Hospital Port Kembla Hospital Port Macquarie Base Hospital President Private Hospital Prince of Wales Hospital Prince of Wales Private Queanbeyan District Hospital and Health Service Quirindi Community Hospital Rankin Park Rehabilitation Royal Hospital for Women Royal Newcastle Hospital Royal North Shore Hospital Royal Prince Alfred Hospital Ryde Hospital Scott Memorial Hospital; Scone Shellharbour Hospital Shellharbour Private Hospital Shoalhaven District Memorial Hospital Singleton District Hospital South East Regional Hospital Southern Highlands Private Hospital Springwood Hospital St George Hospital St George Private Hospital St Vincent's Hospital; Darlinghurst St Vincent's Private Hospital St Vincent's Private Hospital - Lismore Strathfield Private Hospital Sutherland Hospital Sydney Adventist Hospital Sydney Children's Hospital Sydney Hospital & Sydney Eye Hospital Sydney Private Hospital Sydney South West Private Hospital Tamara Private Hospital Tamworth Base Hospital Temora Hospital Tenterfield Community Hospital Children's Hospital at Westmead Cootamundra Hospital Hills Private Hospital Mater Private Hospital Tweed Hospital Wollongong Hospital Tomaree Community Hospital Trangie Multi Purpose Service Tumut District Hospital Wagga Wagga Base Hospital Walcha Multi Purpose Service Walgett Hospital Warialda Multi Purpose Service Warners Bay Private Hospital Warren Multi-Purpose Health Service Wauchope District Memorial Hospital Wee Waa Hospital Westmead Hospital Westmead Children's Hospital Westmead Private Hospital Wollongong Private Hospital Wolper Jewish Hospital Wyalong Hospital Wyong Hospital Yass District Hospital Young District Hospital Northern Territory Alice Springs Hospital Darwin Private Hospital Gove District Hospital International Hospital - NT Katherine District Hospital Palmerston Regional Hospital Royal Darwin Hospital Tennant Creek Hospital Queensland Allamanda Private Hospital - CLOSED Alpha Hospital Aramac Hospital Arthur Gorrie Correctional Centre Atherton Hospital Augathella Hospital Aurukun Remote Centre Ayr Hospital Babinda Health Centre Baillie Henderson Ballina Hospital Bamaga Hospital Barcaldine Hospital Beaudesert Hospital Biggenden Hospital Biloela Hospital Birdsville Hospital Blackall Hospital Boonah Hospital Boulia Hospital Bowen Hospital Brisbane Endoscopy Services Brisbane Private Hospital Buderim Private Hospital Bundaberg Hospital Burketown Health Centre Caboolture Hospital Caboolture Private Hospital Cairns Day Surgery Cairns Hospital Cairns Private Hospital Caloundra Hospital Caloundra Private Hospital Canossa Private Hospital Capricorn Coast Hospital Charleville Hospital Charters Towers Hospital Chermside Day Hospital Chermside Dialysis Clinic Childers Hospital Chinchilla Hospital Clermont Hospital Coen Primary Health Care Centre Collinsville Hospital Cooktown Hospital Cunnamulla Hospital Dalby Hospital Dauan Island Primary Health Centre Dirranbandi Hospital Dysart Hospital Emerald Hospital Enoggera 2nd Health Support Battalion Esk Hospital Friendly Society Private Hospital Gatton Hospital Gayndah Hospital Georgetown Primary Health Centre Gin Gin Hospital Gladstone Hospital Gold Coast Private Hospital Gold Coast Surgical Hospital - CLOSED Gold Coast University Hospital Goondiwindi Hospital Gordonvale Hospital Greenslopes Private Hospital Gympie Hospital Gympie Private Hospital - CLOSED Hamilton Island Medical Centre Herberton Hospital Hervey Bay Hospital Hervey Bay Surgical Hospital Hillcrest Rockhampton Private Hospital Home Hill Health Service Hughenden Hospital Ingham Hospital Innisfail Hospital Ipswich Day Hospital Ipswich Hospital Jandowae Hospital John Flynn Private Hospital Julia Creek Hospital Kawana Private Hospital Kilcoy Hospital Kingaroy Hospital Kowanyama Hospital Lady Bjelke-Petersen Community Hospital Laidley Hospital Lockhart River Primary Health Care Centre Logan Hospital Longreach Hospital Mackay Base Hospital Mackay Specialist Day Hospital Magnetic Island Medical Centre Maleny Hospital Mareeba Hospital Maryborough Hospital Mater Children's Hospital - CLOSED Mater Children's Private Hospital Mater Hospital Brisbane Mater Hospital Bundaberg Mater Hospital Gladstone -CLOSED Mater Hospital Mackay Mater Hospital Rockhampton Mater Mothers' Hospital Mater Mothers' Private Hospital Mater Private Hospital Brisbane Mater Private Hospital Hyde Park Mater Private Hospital Redland Mater Private Hospital Springfield Mater Private Hospital Townsville Miles Health Services Mitchell Hospital Monto Hospital Moranbah Hospital Mornington Island Hospital Mossman Hospital Mount Isa Hospital Mount Morgan Hospital Mungindi Hospital Murgon Hospital Nambour Day Surgery Nambour General Hospital Nambour Selangor Private Hospital Nanango Hospital Noosa Hospital Noosa Surgical and Endoscopy Centre Normanton Hospital North West Private Hospital Northside Endoscopy Service Oakey Hospital Pacific Day Surgery Centre Pacific Private Day Hospital Pacific Private Hospital Palm Island Hospital Peninsula Private Hospital Peninsula Specialist Centre Pindara Private Hospital Pioneer Valley Private Hospital Prince Charles Hospital Princess Alexandra Hospital Proserpine Hospital Queen Elizabeth II Jubilee Hospital Queensland Children's Hospital Redcliffe Hospital Redland Hospital Richmond Hospital, Richmond Hill Robina Hospital Rockhampton Hospital Roma Hospital Royal Brisbane and Women's Hospital Royal Children's Hospital - CLOSED Sarina Hospital South Bank Day Hospital South Burnett Private Hospital - CLOSED Southcoast Digestive Diseases Centre Southport Day Hospital Springsure Hospital St Andrew's Ipswich Private Hospital St Andrew's Toowoomba Hospital St Andrew's War Memorial Hospital St George Hospital St Stephen's Hospital Hervey Bay St Stephen's Maryborough Hospital - CLOSED St Vincent’s Private Hospital Northside St Vincent's Private Hospital Brisbane St Vincent's Private Hospital Toowoomba Stanthorpe Hospital Sunnybank Private Hospital Sunshine Coast University Hospital Sunshine Coast University Private Hospital Surat Hospital Surgical, Treatment and Rehabilitation Service T&G Day Surgery Tara Hospital Taroom Hospital Texas Hospital Thursday Island Hospital Toowong Private Hospital Toowoomba Hospital Toowoomba Surgicentre Townsville Day Surgery Townsville University Hospital Tri Rhosen Day Hospital Tully Hospital Tweed Day Surgery Tweed Hospital Varsity Lakes Day Hospital Warwick Hospital Weipa Integrated Health Service Wesley Hospital Winton Hospital South Australia Adelaide Day Surgery Angaston District Hospital Ardrossan Community Hospital Ashford Hospital Balaklava Soldiers’ Memorial District Hospital Barossa Hills Fleurieu Region Blackwood Hospital Booleroo Centre Hospital Bordertown Memorial Hospital Burnside War Memorial Hospital Calvary Adelaide Hospital Calvary Central District Hospital Calvary North Adelaide Hospital Ceduna District Health Services Central Districts Private Hospital Clare Hospital Coober Pedy Hospital Crystal Brook Hospital Cummins & District Memorial Hospital Flinders Medical Centre Flinders Private Hospital Gawler Health Service Glenelg Community Hospital Incorporated Gumeracha District Soldiers Memorial Hospital Jamestown Hospital & Health Service Julia Farr Centre - CLOSED Kangaroo Island Health Service Kapunda Hospital Kimba District Hospital Lameroo District Health Service Loxton Hospital Complex Lyell McEwin Hospital Marree Health Service McLaren Vale and Districts War Memorial Hospital Memorial Hospital Meningie & Districts Memorial Hospital & Health Service Mid-West Health Elliston Millicent and District Hospital and Health Service Modbury Hospital Moonta Health & Aged Care Service Mount Barker District Soldiers' Memorial Hospital Mount Gambier & Districts Health Service Murray Bridge Soldiers' Memorial Hospital Naracoorte Health Service Noarlunga Health Services Incorporated North Eastern Community Hospital Northern Yorke Peninsula Hospital Oodnadatta Hospital Parkwynd Private Hospital - CLOSED Peterborough Soldiers' Memorial Hospital Port Augusta Hospital and Regional Health Service Port Lincoln Hospital and Health Service Port Pirie Regional Health Service Queen Elizabeth Hospital Quorn Health Service Renmark Paringa District Hospital Repatriation General Hospital, Daw Park Riverland Regional Hospital Royal Adelaide Hospital South Coast District Hospital Southern Yorke Peninsula Health Service Sportsmed SA St Andrew's Hospital Stirling District Hospital Strathalbyn & District Health Service Tailem Bend District Hospital Tanunda War Memorial Hospital Waikerie Health Services Wallaroo Hospital and Health Services Whyalla Hospital and Health Service Women's & Children's Hospital Yorketown Hospital and Health Service Tasmania Calvary Hospital Hobart Calvaray St John's Hospital Hobart Day Surgery Pty Ltd Hobart Private Hospital Launceston General Hospital Mersey Community Hospital North West Private Hospital North West Regional Hospital Royal Hobart Hospital St Helens Private Hospital St Luke's Private Hospital St Vincent's Hospital The Eye Hospital Victoria Aesthetic Surgery and Laser Centre Albert Road Clinic Albury Wodonga Health - Wodonga Campus Albury Wodonga Private Hospital Alexandra District Hospital Alfred Health Alfred Health - Caulfield Alfred Health - Sandringham Alpine Health Appearance Medical Centre Austin Health - Austin Hospital Austin Health - Heidelberg Repatriation Hospital Austin Health - Repatriation Hospital Avenue Hospital Bairnsdale Regional Health Service Ballarat Day Procedure Centre Ballarat Health Service Barwon Health Bass Coast Health Bayside Day Procedure and Specialist Centre Bayside Endoscopy Day Hospital Beaufort and Skipton Health Service Beechworth Health Service Beleura Private Hospital Bellbird Private Hospital Benalla Health Bendigo Health Care Group Berkeley Day Surgery Berwick Surgicentre Boort District Hospital Brighton Plastic Surgery Centre Bundoora Endoscopy Centre Bundoora Extended Care Centre Cabrini Health Cabrini Health - Brighton Cabrini Health - Malvern Calvary Health Care Bethlehem Camberwell Eye Clinic Day Surgery Caritas Christi Hospice Casterton Memorial Hospital Castlemaine Health Central Gippsland Health Service Central Highlands Rural Health Central Highlands Rural Health - Hepburn Central Highlands Rural Health - Kyneton Centre of Cosmetic and Plastic Surgery (Melbourne) Chesterville Day Hospital Cliveden Hill Private Hospital Coburg Endoscopy Centre Cohuna District Hospital Colac Area Health Como Private Hospital Corryong Health Cotham Private Hospital Croydon Day Surgery Centre Dandenong Eye Clinic Darebin Endoscopy Services Dental Health Services Victoria Diaverum Diamond Valley Clinic Digestive Health Centre Djerriwarrh Health Service Donvale Rehabilitation Hospital Dr Walters Vasectomy Clinic Dunmunkle Health Services East Grampians Health Service East Wimmera Health Service Eastern Eye Surgery Centre Eastern Health Eastern Health - Angliss Eastern Health - Box Hill Eastern Health - Healesville Eastern Health - Maroondah Eastside Endoscopy Centre Echuca Regional Health Edenhope and District Hospital Elsternwick Private Hospital Epworth HealthCare Epworth HealthCare - Cliveden Hill Epworth HealthCare - Eastern Epworth HealthCare - Freemasons Epworth HealthCare - Geelong Epworth HealthCare - Richmond Essendon Day Procedure Centre Essendon Private Hospital Eye Clinic Footscray Fertility Control Clinic Forest Hill Dialysis Centre Frances Perry House Frankston Private Day Surgery Geelong Private Hospital Gippsland Southern Health Service Glen Eira Day Surgery Glenferrie Private Hospital Goulburn Valley Health Heidelberg Endoscopy and Day Surgery Centre Hesse Rural Health Service Heywood Rural Health Hobson Bay Endoscopy Werribee Hobsons Bay Endoscopy Centre Holmesglen Private Hospital Hyperbaric Health Inglewood and District Health Service Ivanhoe Endoscopy and Day Procedure Centre John Fawkner Private Hospital Jolimont Endoscopy Kerang and District Health Kew Endoscopy Centre Kew Private Dialysis Centre Kilmore District Hospital Kingston Centre Knox Private Hospital Knox Surgicentre Kooweerup Regional Health Service Kyabram and District Health Service Latrobe Private Hospital Latrobe Regional Hospital Linacre Private Hospital Lorne Community Hospital Maldon Hospital Mallee Track Health and Community Service Malvern Private Manangatang and District Hospital Manningham Day Procedure Centre Mansfield District Hospital Maryborough District Health Service Maryvale Private Hospital Masada Private Hospital McIvor Health and Community Services Melbourne Day Surgery Melbourne Eastern Private Hospital Melbourne Endoscopy Group Day Procedure Centre Melbourne Endoscopy Monash Day Procedure Centre Melbourne Family Planning Clinic Melbourne Health Melbourne Health - Royal Melbourne Hospital Melbourne Health - Royal Park Campus Melbourne Private Hospital Mercy Hospital for Women Mercy Public Hospitals Inc Mildura Base Hospital Mildura Health Private Hospital Mitcham Private Hospital Monash Health Monash Health - Casey Monash Health - Clayton Monash Health - Cranbourne Monash Health - Dandenong Monash Health - Jessie McPherson Private Hospital Monash Health - Moorabbin Monash IVF Clinic Monash Surgical Private Hospital Mount Eliza Rehabilitation, Aged & Palliative Care Moyne Health Services Mulgrave Private Hospital Murray Valley Private Hospital Nathalia District Hospital NCN Health- Cobram Campus NCN Health- Numurkah Campus Neerim District Health Service Nhill Medical Clinic Noble Park Endoscopy Centre North West Endoscopy Services Northeast Health Wangaratta Northern Health Northern Health - Broadmeadows Northern Hospital Northpark Private Hospital O'Connell Family Centre (Grey Sisters) Omeo District Health Orbost Regional Health Otway Health and Community Services Peninsula Endoscopy Centre Peninsula Health - Frankston Hospital Peninsula Health - Rosebud Hospital Peninsula Oncology Centre Peninsula Private Hospital Peter James Centre Peter MacCallum Cancer Centre Portland District Health Queen Elizabeth Centre Radiation Oncology Centre - Frankston Radiation Oncology Victoria - Murray Valley Radiation Oncology Victoria - Ringwood Reservoir Private Hospital Ringwood Private Hospital Robinvale District Health Services Rochester and Elmore District Health Service Rosebud SurgiCentre Royal Children's Hospital - Melbourne Royal Talbot Rehabilitation Centre Royal Victorian Eye and Ear Hospital Royal Women's Hospital - Melbourne Rural Northwest Health Seymour District Memorial Hospital - Seymour Health Shepparton Private Hospital Sir John Monash Private Hospital South Eastern Private Hospital South Gippsland Hospital South West Healthcare South West Healthcare - Camperdown South West Healthcare - Warrnambool Southern Eye Centre, Day Surgery and Laser Clinic Specialist Surgicentre Docklands Specialist Surgicentre Geelong Springvale Endoscopy Services St George's Health Service - Kew St John of God Hospital - Ballarat St John of God Hospital - Bendigo St John of God Hospital - Berwick St John of God Hospital - Geelong St John of God Hospital - Warrnambool St Kilda Day Hospital St Kilda Laservision Centre St Vincent's Hospital St Vincent's Private St Vincent's Private - Mercy St Vincent's Private - Kew Stawell Regional Health Stonnington Day Surgery Swan Hill District Hospital Swan Hill Medical Group Taburn Specialist Medical Centre Tallangatta Health Service Terang and Mortlake Health Service The Bays Hospital The Glen Endoscopy Centre The Hampton Park Women's Health Care Centre The Women's Clinic Day Surgical Centre Timboon and District Healthcare Service Toorak Malvern Day Surgery Centre Toorak Cosmetic Surgery Day Centre Tweddle Child and Family Health Service Vermont Private Hospital Victoria Parade Day Surgery (Derm & Cosmetic) Victoria Parade Surgery Centre Wangaratta Private Hospital Warringal Private Hospital Waverley Endoscopy Waverley Private Hospital Werribee Mercy Hospital West Gippsland Healthcare Group West Wimmera Health Service Western Day Surgery Western District Health Service - Hamilton Western District Health Service - Coleraine Campus Western Health Western Health - Footscray Western Health - Sunshine Western Health - Williamstown Western Private Hospital Western Suburbs Endoscopy Services Westpoint Endoscopy Day Hospital Wimmera Health Care Group Yarram and District Health Service Yarrawonga District Health Service Yea and District Memorial Hospital Western Australia Albany Hospital Armadale-Kelmscott Memorial Hospital Attadale Private Hospital Bentley Health Service Bethesda Hospital Boyup Brook Soldiers Memorial Hospital Bridgetown Hospital Broome Hospital Bruce Rock Memorial Hospital Bunbury Regional Hospital Busselton Hospital Carnarvon Hospital Colin Street Day Surgery Collie Health Service Denmark Hospital and Health Service Derby Hospital Esperance Hospital Exmouth Multipurpose Service Fiona Stanley Hospital Fremantle Hospital & Health Service Galliers Wing and Specialist Centre Geraldton Hospital Glengarry Private Hospital Harvey Hospital Hedland Health Campus Hollywood Private Hospital Joondalup Health Campus Kalamunda District Community Hospital Kaleeya Hospital - CLOSED Kalgoorlie Hospital Katanning Hospital King Edward Memorial Hospital for Women Kununurra Hospital Lake Grace District Hospital Lions Eye Institute Manjimup Hospital Margaret River Hospital Mawarnkarra Health Service McCourt Street Day Surgery Meekatharra District Hospital Merredin District Hospital Moora Hospital Mount Hospital Mt Lawley Private Hospital Murdoch Surgicentre Narrogin Regional Hospital Newman Hospital Nickol Bay Hospital - CLOSED Northam Regional Hospital Osborne Park Hospital Paraburdoo District Hospital Peel Health Campus Pemberton Hospital Pivet Medical Centre Plantagenet Cranbrook Hospital (Mount Barker Hospital) Princess Margaret Hospital Princess Margaret Hospital for Children Rockingham General Hospital Royal Perth Hospital Royal Perth Hospital Shenton Park Campus Sir Charles Gairdner Hospital South Perth Hospital Southern Cross District Hospital St John of God Bunbury Hospital St John of God Geraldton Hospital St John of God Mount Lawley Hospital St John of God Murdoch Hospital St John of God Subiaco Hospital Subiaco Private Hospital Swan Kalamunda Health Service Tom Price District Hospital Waikiki Private Hospital Warren District Hospital Westminster Day Surgery Wongan Hills Hospital York Hospital Papua New Guinea Port Moresby General Hospital Nauru Nauru Hospital New Zealand Wellington Hospital
ACSQHC-ARCR-437	Severe Cutaneous Adverse Reactions	Nil	Australasian Registry for Severe Cutaneous Adverse Reactions	AUS-SCAR	https://ausscar.org.au/	Jason Trubiano, Austin Health, jason.trubiano@austin.org.au	2019	AUS-SCAR is a prospective registry of clinical data and pair biorepositry samples (optional) in 13 hospital networks across Australia. Patients are prospectively recruited following informed or Medical Decision Maker consent and clinical information, treatment and outcome data is collected. Patient follow up is performed at 3 months and 12 months to ensure appropriate patient follow-up is established and assess long-term care outcomes. A waiver of consent is available to capture cases associated with inpatient early mortality. The data is externally validated to ensure quality and the AUS-SCAR is governed by a multidisciplinary steering committee with established terms of reference. AUS-SCAR is hosted by Austin Health and University of Melbourne and led by Chief Investigator Professor Jason Trubiano. The purpose is to collect data on the burden of SCAR in Australia, the impacts on patient healthcare and patient outcomes and lead to improved diagnosis, prevention, treatment of SCAR with co-development of national guidelines and national care standards.	Austin Health	Austin Health Human Research Ethics Committee, Project reference: HREC/50791/Austin-2019	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executive Shared with consumers Shared with medical colleges Reported in other public reports	Validated Drug Hypersensitivity Quality of Life	The Australian Hospital Patient Experience Question Set (AHPEQS)	New South Wales Nepean Hospital Royal North Shore Hospital St George Hospital St Vincent's Hospital (Darlinghurst) Northern Territory Royal Darwin Hospital Queensland Royal Brisbane & Women's Hospital South Australia The Royal Adelaide Hospital Victoria Austin Health Peter MacCallum Cancer Centre Royal Melbourne Hospital - City Campus St Vincent's Hospital (Melbourne) Ltd The Alfred Monash Health Western Australia Fiona Stanley Hospital Other participating sites Doherty Institute Murdoch University University of Melbourne
ACSQHC-ARCR-438	Multiple myeloma and related diseases	High burden cancers	Myeloma and related Diseases Registry	MRDR	http://www.mrdr.net.au/	Transfusion Research Unit, Monash University, sphpm-myeloma@monash.edu	2012	This prospective clinical quality registry aims to improve myeloma outcomes by providing an evidence-base for the best strategies to diagnose, treat and support people with myeloma and related diseases. It is a registry of newly diagnosed patients with multiple myeloma, MGUS, plasma cell leukaemia or plasmacytoma. It collects information on demographics, diagnosis, treatment, response to therapy and outcomes including survival, progression free survival and quality of life. The aims of the Myeloma & Related Diseases Registry are to: Monitor access to care Benchmark outcomes nationally and internationally Explore variation in practice, process and outcome measures Monitor trends in incidence and survival Explore the factors that influence outcomes including survival and quality of life Act as a resource for clinical trials The MRDR has an industry-funded "sister registry", the Asia-Pacific MRDR (APAC MRDR), with the same aims and purpose. The APAC-MRDR collects data that mirrors the ANZ registry from Korea, Singapore, and Malaysia with other countries to follow.	Monash University	HREC/16/Alfred/126	Feedback to contributing clinicians in six monthly site data reports Reported in Annual Report Shared with clinicians Shared with hospital executive Publish quarterly registry updates in MyeNews, published by Myeloma Australia, a national myeloma patient advocacy foundation	Collect EQ-5D-5L	Nil	https://www.mrdr.net.au/about-us/participating-sites/ Australian Capital Territory Canberra Hospital Victoria The Alfred Hospital Peninsula Health (Frankston) Austin Hospital Northern Health (Northern Hospital) The Royal Melbourne Hospital Royal Melbourne /Peter Mac Monash Health (MMC) Cabrini - Malvern St Vincent's Hospital, Melbourne Eastern Health (Box Hill) Latrobe Regional Hospital Bairnsdale Regional Health Service Central Gippsland Health Service (Sale Hospital) Epworth Freemasons Hospital University Hospital Geelong New South Wales Royal Prince Alfred Hospital St George Hospital Concord Repatriation General Hospital Lismore Hospital Royal North Shore Hospital Liverpool Hospital St Vincent's Hospital, Sydney Nepean Cancer Care Border Medical Oncology Jarrett St Specialist Centre ICON Cancer Care Queensland Princess Alexandra Hospital Royal Brisbane and Women's Hospital Toowomba Hospital Townsville Hospital Northern Territory Royal Darwin Hospital Western Australia Sir Charles Gairdner Hospital Hollywood Private Hospital South Australia Flinders Medical Centre Adelaide Cancer Centre Tasmania Royal Hobart Hospital Launceston Hospital New Zealand Middlemore Hospital Christchurch Hospital Dunedin Hospital Wellington Hospital Nelson Hospital Whangarei Hospital
ACSQHC-ARCR-439	Out-of-hospital cardiac arrest	Ischemic heart disease	Victorian Ambulance Cardiac Arrest Registry	VACAR	https://www.ambulance.vic.gov.au/about-us/research/clinical-quality-registries-and-clinical-trials/	Ashanti Dantanarayana, Ambulance Victoria, Ashanti.Dantanarayana@ambulance.vic.gov.au Dr Ziad Nehme, Ambulance Victoria, ziad.nehme@ambulance.vic.gov.au	1999	The VACAR is a clinical quality registry of all out-of-hospital cardiac arrest (OHCA) events in Victoria. The registry captures a comprehensive ‘roadside to recovery’ perspective of the OHCA patient, capturing over 150 data elements across the prehospital, hospital, and recovery journey. It is used extensively to improve systems-of-care for OHCA patients in Victoria and has been recognised internationally for its contribution to the evidence-base in resuscitation science. Registry data is collected from Triple Zero calls, Communication Centre dispatch records, Emergency Medical Services (EMS) patient care records, real-time CPR quality data from defibrillators, hospital medical records and from telephone interview of adult survivors at 12 months post-arrest. Hospital outcome data is supplemented by death records from the Victorian Registry of Births, Deaths and Marriages. The registry also collects information relating to the causes of death for OHCA patients from the National Coronial Information System (NCIS). Data for all OHCA patients attended by AV has been captured for over 120,000 patients since 1999. Data is collated in the registry based on an internationally agreed template for resuscitation registries (Utstein template). VACAR provides information for the assessment and benchmarking of EMS performance in relation to the treatment and outcomes of OHCA patients. In particular, a number of key performance indicators (KPIs) have been implemented, which are designed to measure the quality and safety of care. KPIs include ambulance response times, rate of successful defibrillation, CPR quality metrics (various), prehospital return of spontaneous circulation, event survival and survival to hospital discharge.	Ambulance Victoria	Monash University HREC Project ID: 21046 Department of Health and Human Services Approval (QI initiative) Number 08/02	Feedback to contributing clinicians - team performance reports, quarterly regional reports Reported in Annual Report (Public) Quarterly Steering Committee Report KPIs reported to the Department of Health (Victoria) as part of the Ambulance Victoria Standard Operating Procedures	European Quality of Life Five Dimension (EQ-5D-5L) European Quality of Live visual analog scale (EQ VAS) 12-item Short Form Health Survey (Sf-12) Modified Fatigue Impact Scale (MFIS) Glasgow Outcome Scale (GOS) Glasgow Outcome Scale Extended (GOSE) Hospital Anxiety and Depression Scale (HADS) Return to work Living status	Nil	Victoria Albury Wodonga Hospital Alexandra District Health (The) Alfred Hospital (The) Angliss Hospital Anne Caudle Centre (The) Austin Hospital Ararat Hospital Bairnsdale Regional Health Service (The) Bays Hospital - Mornington (The) Bays - Brighton Campus Ballarat Base Hospital Barwon Health - Geelong Hospital Campus Barwon Health North Beaufort and Skipton Health Services – Beaufort Campus Beaufort and Skipton Health Services – Skipton Campus Bellbird Private Hospital Benalla and District Memorial Hospital Bendigo Hospital Box Hill Hospital Cabrini Hospital – Brighton Campus Cabrini Hospital – Malvern Campus Casey Hospital Casterton Memorial Hospital Caulfield Hospital Central Gippsland Health – Sale Hospital Cobram District Health Cohuna District Hospital Dandenong Hospital East Grampians Health Service – Ararat Campus East Grampians Health Service – Willaura Campus East Wimmera Health Service – Birchip Campus East Wimmera Health Service – Charlton Campus East Wimmera Health Service – Donald Campus East Wimmera Health Service – St Arnaud Campus East Wimmera Health Service – Wycheproof Campus Echuca Regional Health Edenhope and District Memorial Hospital Epworth Hospital – Eastern Campus Epworth Hospital – Richmond Campus Epworth Freemasons Hospital Epworth Rehabilitation Hospital - Brighton Campus Euroa Health Footscray Hospital Frankston Hospital Goulburn Valley Health - Shepparton Campus Goulburn Valley Health - Tatura Hospital Great Ocean Road Health – Apollo Bay Hospital Great Ocean Road Health – Lorne Community Hospital Heidelberg Repatriation Hospital Hepburn Health Service Inglewood and District Health Service Jessie McPherson Private Hospital John Fawkner Private Hospital Kerang and District Hospital Kilmore and District Hospital Kingston Centre Knox Private Hospital Kooweerup Regional Health Service Korumburra Hospital Kyabram and District Health Service Kyneton District Health Service Leongatha Hospital Lorne Community Hospital Latrobe Regional Hospital Mansfield District Hospital Maroondah Hospital Maryborough District Health Service – Dunolly Campus Maryborough District Health Service – Maryborough Campus Melbourne Private Hospital Mildura Base Hospital Monash Medical Centre - Clayton Campus Monash Medical Centre - Moorabbin Campus Mulgrave Private Hospital Northeast Health Wangaratta (The) Northern Hospital Numurkah District Health Service Omeo District Health Orbost Regional Health Peninsula Private Hospital Portland District Health Robinvale District Health Services - Manangatang Campus Robinvale District Health Services - Robinvale Campus Rochester and Elmore District Health Service Rosebud Hospital (The) Royal Children's Hospital - Melbourne (The) Royal Children's Hospital - Travancore Campus (The) Royal Melbourne Hospital - Parkville Campus (The) Royal Melbourne Hospital - Royal Park Campus Rural Northwest Health Sandringham Hospital Seymour District Memorial Hospital South Gippsland Hospital South West Healthcare – Camperdown Hospital South West Healthcare – Warrnambool Base Hospital St John Of God Ballarat Hospital St Vincent's Hospital Melbourne St Vincent's Private Hospital East Melbourne St Vincent's Private Hospital Fitzroy St Vincent's Private Hospital Kew St Vincent's Private Hospital Werribee Sunshine Hospital Swan Hill District Health – Nyah Campus Swan Hill District Health - Swan Hill Campus Terang and District Health Service (The) University Hospital Geelong Timboon and District Healthcare Service Upper Murray Health and Community Services Warringal Private Hospital Werribee Mercy Hospital West Gippsland Hospital West Wimmera Health Service – Nhill Campus Western District Health Service – Hamilton Campus Western District Health Service – Penshurst Campus Western Private Hospital Wimmera Health Care Group – Dimboola Campus Wimmera Health Care Group – Horsham Campus Wodonga Hospital Yarram and District Health Service Yarrawonga District Health Yea and District Memorial Hospital
ACSQHC-ARCR-441	Head and Neck Cancer	Nil	Australian Comprehensive Cancer Outcomes and Research Database Head and Neck Tumour Database	ACCORD Head and Neck Tumour	Nil	David Wiesenfeld, Melbourne Health, David.Wiesenfeld@mh.org.au	2007	Records presentation, treatment and outcomes for patients at Melbourne Health with Head and Neck Cancer	Melbourne Health	Melbourne Health HREC: 2005-198	Reported in other public reports Reported through internal Tumour Stream audits	Nil	Nil	Melbourne Health
ACSQHC-ARCR-444	Congenital heart disease	Neonatal critical care	Australia and New Zealand Congenital Heart Disease Registry	ANZ CHD Registry	https://www.chaanz.org.au/anz-congenital-heart-disease-databa	David Celermajer, Royal Prince Alfred Hospital - Cardiology, David.celermajer@health.nsw.gov.au	2021	The ANZ CHD Registry is an initiative designed to transform care for congenital heart disease (CHD) patients in Australia and New Zealand. This registry will become a comprehensive resource by enrolling over 70,000 CHD patients, encompassing all age groups. This data will quantify the lifelong impact of CHD and shed light on disease progression, current management strategies, and factors affecting health outcomes. The registry will further enhance estimates of CHD prevalence within the ANZ population and evaluate the effectiveness of CHD interventions. Ultimately, these insights will directly inform advancements in CHD care, resource allocation, patient education, and research priorities, aligning perfectly with the National Strategic Action Plan for CHD. This data-driven approach has the potential to revolutionize CHD care and significantly improve the lives of countless patients across Australia and New Zealand.	Congenital Heart Alliance of Australia and New Zealand (CHAANZ)	Ethics Review Committee Royal Prince Alfred Zone of the Sydney Local Health District Reference: X17-0441 & 2019/ETH07472	Feedback to contributing clinicians Shared with consumers Reported in Annual Report Reported in other public reports Other Academic Publication	Nil	Nil	New South Wales John Hunter Hospital Royal Newcastle Centre Royal Prince Alfred Hospital The Children's Hospital at Westmead Queensland Queensland Children's Hospital The Prince Charles Hospital South Australia The Royal Adelaide Hospital Women's And Children's Hospital, Adelaide Victoria Royal Melbourne Hospital - City Campus The Royal Children's Hospital, Melbourne Western Australia Perth Children’s Hospital Sir Charles Gairdner Hospital
ACSQHC-ARCR-447	Patients with cardiac arrest, acute cardiac failure or acute respiratory failure requiring extracorporeal membrane oxygenation	Adult critical care	Australian and New Zealand extracorporeal membrane oxygenation (ECMO) registry	EXCEL	https://www.monash.edu/medicine/sphpm/anzicrc/research/excel	Carol Hodgson, Monash University, carol.hodgson@monash.edu	2019	The use of ECMO is associated with significant costs and risks, and it requires specialist training and expertise. In order to better prepare for the organisation of these complex interventions in the ICU across regions, we need to have accurate data on patients undergoing ECMO. The EXCEL registry represents a novel, coordinated effort to create a high-quality, detailed, prospective registry of patients requiring ECMO at Australian ECMO centres. EXCEL includes data on ECMO retrieval, imitation, patient selection, device, cannula and person cannulating, daily data for 7 days, complications, costs and PROMs (HRQoL, disability, return to work, cognitive function) at 6 and 12 months. Additionally we have 4 embedded clinical trials. EXCEL can be used to address specific safety concerns, clinical questions and process of care issues. As a result, EXCEL can be designed and implemented to answer new investigator-initiated, hypothesis-driven clinical questions. We currently have 4 embedded clinical trials.	Monash University	43134/Alfred Health HREC	Feedback to contributing clinicians - Quarterly reports provided to each participating hospital Shared with clinicians Reported in Annual Report Shared with consumers Shared with hospital executive Shared with medical colleges Heart Foundation Website Reported to State/Territory health departments - To commence in June 2020	EQ5D-5L, WHODAS 2.0, ADL, IADL, Modified Rankin Scale and MoCA Blind	Nil	Australian Capital Territory Canberra Hospital New South Wales John Hunter Hospital Liverpool Hospital Prince of Wales Hospital Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital St Vincent’s Hospital Sydney Westmead Hospital Queensland Gold Coast University Hospital Prince Charles Hospital Princess Alexandra Hospital Royal Brisbane and Women’s Hospital Townsville Hospital South Australia Flinders Medical Centre Royal Adelaide Hospital Tasmania Launceston Hospital Royal Hobart Hospital Victoria Alfred Hospital Austin Hospital Box Hill Hospital Epworth Hospital Frankston Hospital Monash Medical Centre Royal Melbourne Hospital St Vincent’s Melbourne University Hospital Geelong Western Australia Fiona Stanley Hospital Sir Charles Gairdner Hospital New Zealand Auckland Hospital
ACSQHC-ARCR-451	Systemic Sclerosis (Scleroderma) and variants	Nil	Australian Scleroderma Cohort Study	ASCS	Under development	Maryam Tabesh, St Vincent’s Hospital Melbourne, maryam.tabesh@svha.org.au	2007	Scleroderma is a multisystem disease of unknown aetiology which has the highest disease-related morbidity and mortality of the autoimmune rheumatic diseases. The Australian Scleroderma Interest Group (ASIG) is a national collaboration of rheumatologists, with a special interest in improving the outcomes of patients with scleroderma. ASIG established the ASCS, a longitudinal observational cohort that provides a framework for clinical and laboratory research enabling collaborations with other Australian researchers and internationally. The primary objective of the ASCS is to enhance clinical care by increasing the rate of screening for scleroderma-related cardiopulmonary complications to allow earlier identification of patients at high risk, and institution of timely treatment. Other objectives include: Contribution to research into predisposing factors for serious complications National data linkage to quantify burden of disease and disease outcomes Contribution to an understanding of the most effective treatments Foster research in systemic sclerosis among early career rheumatologists and advanced trainee	Australian Rheumatology Association	St Vincent's Hospital Melbourne HREC: Protocol No. HREC-A 020/07	Reported in other public reports Shared with clinicians Shared with consumers	Scleroderma Health Assessment Questionnaire (sHAQ) General Health Assessment Questionnaire (HAQ) Short Form 36 (SF-36) PROMIS-29 Profile 2.0 UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract (UCLA SCTC GIT 2.0) Instrument Functional Assessment of Chronic Illness Therapy (FACIT)	Nil	Australian Capital Territory Canberra Hospital New South Wales John Hunter Hospital Royal Prince Alfred Hospital South Australia Royal Adelaide Hospital Victoria Monash Medical Centre St. Vincent’s Hospital Melbourne Western Australia Fiona Stanley Hospital Royal Perth Hospital Tasmania Hobart Private Hospital
ACSQHC-ARCR-454	Out-of-hospital Cardiac Arrest (OHCA)	Ischaemic Heart Disease	NSW Ambulance Cardiac Arrest Registry	Nil	Nil	Nicole Packham, NSW Ambulance, nicole.packham@health.nsw.gov.au	2017	The Registry includes all patients with out-of-hospital cardiac arrest (OHCA) who were attended by NSW Ambulance clinicians since 1 January 2017. The data collected from clinical and operational records describe the pre-hospital links in the cardiac arrest 'chain of survival' (the series of steps that gives patients the best chance of surviving an OHCA). Record linkage with the NSW Registry of Births, Deaths and Marriages provides data on survival and interviews with survivors at 12 examine quality of life. The key data fields are based on the Utstein template, which was developed to promote uniform presentation of OHCA survival data across different regions of the world. The outcomes measured are survival to hospital; survival at 30 days and quality of life at 12 months post arrest. Key aims include: to improve service-level performance and patient safety by enhancing the quality, accessibility and timing of the information that is available to clinical decision-makers; to support research that may inform OHCA guidelines; to measure the long-term impact of OHCA on patients’ quality-of-life and functional capacity and to participate in the Australian Resuscitation Outcomes Consortium (Aus-ROC). Au-ROC is an epistry (epidemiological registry) that combines and compares data from OHCA registries in Australia and New Zealand to increase the understanding of the intra-regional, ambulance service and treatment factors that are associated with improved OHCA survival and outcomes.	NSW Ambulance	NSW Population & Health Services Research Ethics Committee 2019/ETH00229	Reported in annual report Shared with clinicians NSW Productivity Commission's Report on Government Services	Quality of life measures via telephone interviews at 12 months	Nil	Not applicable
ACSQHC-ARCR-456	Emergency Laparotomy	Nil	Australian and New Zealand Emergency Laparotomy Audit – Quality Improvement	ANZELA-QI	https://www.surgeons.org/research-audit/morbidity-audits/morbidity-audits-managed-by-racs/anz-emergency-laparotomy-audit-quality-improvement	Kimberley Penglis, The Royal Australasian College of Surgeons, anzela-qi@surgeons.org	2018	The outcomes of patients undergoing emergency laparotomy are measured by assessing the care provided against specified key performance indicators (KPIs). The KPIs include but are not limited to: the presence of consultants or other specialists, preoperative reports of CT scans and postoperative admission to critical care. The ANZELA-QI aims to: Improve patient care by providing timely feedback of process and outcome data Develop broad engagement through emergency laparotomy data collection Identify areas of care requiring improvement and foster collaborative multidisciplinary care Provide the opportunity for research projects	The Royal Australasian College of Surgeons (RACS)	South Metropolitan Health Service Human Research Ethics Committee Reference:RGS0000000848	Routine feedback to contributing clinicians Reported to State/Territory health departments Shared with hospital executive Shared with medical colleges Shared with other clinicians Outcomes provided in an annual report	Nil	Nil	New South Wales Albury Wodonga Health Armidale Rural Referral Hospital Nepean Hospital Port Macquarie Base Hospital Northern Territory Royal Darwin Hospital Queensland Caboolture Hospital Gold Coast University Hospital Logan Hospital Mackay Hospital and Health Service Mater Hospital Brisbane Rockhampton Base Hospital Sunshine Hospital (Western Health) South Australia The Royal Adelaide Hospital Tasmania Royal Hobart Hospital Victoria Ballarat Health Service (Base Hospital) Barwon Health - Geelong Hospital Campus Bendigo Hospital Footscray Hospital (Western Health) Latrobe Regional Hospital Mount Gambier And Districts Health Service St Vincent’s Hospital, Melbourne The Alfred Hospital University Hospital Geelong (Barwon Health) Western Health Western Australia Albany Hospital Bunbury Regional Hospital Fiona Stanley Hospital Royal Perth Hospital Sir Charles Gairdner Hospital St John Of God Midland Public & Private Hospital
ACSQHC-ARCR-461	Colorectal Cancer	High burden cancers	Bowel Cancer Outcomes Registry	BCOR	https://www.bowelcanceraudit.com/	Hayat Dagher, Colorectal Surgical Society of Australia and New Zealand, contact@bowelcanceraudit.com	2007	The Bowel Cancer Outcomes Registry (BCOR) is a Clinical Quality Registry established by the Colorectal Surgical Society of Australia and New Zealand (CSSANZ). It was started as a clinical audit and is a surgeon-led surgical audit applicable to all surgeons who perform colorectal cancer surgery. The BCOR is governed by a collaboration of invested parties (CSSANZ, RACS, NZAGS, GSA, and consumers) and contains over 43,000 treatment episodes. BCOR data is used for clinical audit of the surgical practices of Australian and New Zealand surgeons for the purpose of quality assurance. The audit also works towards creating a large dataset containing Australian and New Zealand data that can be used for research and quality improvement purposes, with the aim of advancing knowledge and understanding of treatment for colorectal cancer. By creating this dataset BCOR will be able to identify areas pertinent to patient safety, identify benchmarks and identify sites that may be performing outside the common bounds of the larger group. Patients 18 years or older undergoing resection or treatment for colorectal cancer are recruited by surgeons at participating public and/or private hospitals in each Australian Jurisdiction and New Zealand via an opt out consent approach. BCOR collects information on patient and tumour characteristics, colorectal cancer management, complications of treatment, and clinical quality indicators relating to quality of surgical and hospital care.	Colorectal Surgical Society of Australia and New Zealand	Monash Health HREC/17/MH/242	Feedback to contributing clinicians Reported in Annual Report A clinician can review their performance against all contributing surgeons at their site and at all contributors to the database at any time; Clinical Quality Reports on risk-adjusted key quality indicators are provided to contributing units/surgeons at a site.	Nil	Nil	https://www.bowelcanceraudit.com/contributors Australian Capital Territory Calvary Private Hospital Bruce Calvary Public Hospital Bruce Canberra Hospital New South Wales Bankstown-Lidcombe Hospital Baringa Private Hospital Belmont Hospital Blacktown Hospital Calvary Riverina Hospital Campbelltown Private Hospital Chris O’Brien Lifehouse Coff's Harbour Health Campus Concord Repatriation General Hospital Hurstville Private Hospital John Flynn Private Hospital John Hunter Hospital Kareena Private Hospital Lingard Private Hospital Lismore Base Hospital Liverpool Hospital Macquarie University Hospital Maitland Hospital Maitland Private Hospital Mater Hospital Sydney Nepean Hospital Newcastle Private Hospital North Shore Hospital North Shore Private Hospital North Shore Specialist Day Hospital Northern Sydney Colorectal Associates Norwest Private Hospital Orange Health Service Port Macquarie Base Hospital Prince of Wales Hospital Prince of Wales Private Hospital Royal North Shore Hospital Royal Prince Alfred Hospital Ryde Hospital St George Private Hospital St George's Hospital St Vincent's Hospital Sydney Strathfield Private Hospital Sydney Adventist Hospital The Sutherland Hospital The Tweed Hospital The Valley Private Hospital Wagga Wagga Base Hospital Westmead Hospital Westmead Private Hospital Wollongong Hospital Northern Territory Royal Darwin Hospital Queensland Allamanda Private Hospital Gold Coast University Hospital Greenslopes Private Hospital Holy Spirit Northside Private Hospital Ipswich Hospital Logan Hospital Mater Hospital Brisbane Mater Private Hospital Brisbane Mater Hospital Pimlico Nambour General Hospital Nambour Selangor Private Hospital Noosa Hospital North West Private Hospital Pindara Private Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Redcliffe Hospital Robina Hospital Royal Brisbane and Women's Hospital St Andrew’s Toowoomba Hospital St Andrew's War Memorial Hospital St Vincent’s Private Hospital Toowoomba Sunnybank Private Hospital Sunshine Coast Private Hospital Buderim Sunshine Coast University Hospital Sunshine Coast University Private Hospital Sunshine Hospital The Wesley Hospital South Australia Calvary Central Districts Hospital Calvary North Adelaide Hospital Calvary Wakefield Hospital Flinders Medical Centre Flinders Private Hospital Lyell McEwin Hospital North Eastern Community Hospital Royal Adelaide Hospital St Andrew’s Hospital Stirling Hospital The Queen Elizabeth Hospital Tasmania Calvary Lenah Valley Hospital Calvary St John's Hospital Calvary St Luke's Hospital Calvary St Vincent's Hospital Hobart Private Hospital Launceston General Hospital Mersey Community Hospital North West Private Hospital Burnie North West Regional Hospital Royal Hobart Hospital Victoria Alfred Hospital Angliss Hospital Austin Hospital Bairnsdale Regional Health Service Ballarat Base Hospital Box Hill Hospital Cabrini Hospital Dandenong Hospital Epworth Richmond Hospital Epworth Eastern Hospital Epworth Freemasons Hospital Epworth Geelong Hospital La Trobe Private Hospital Maroondah Hospital Monash Medical Centre Peninsula Private Hospital Peter MacCallum Cancer Centre Portland District Health St John of God Ballarat Hospital St Vincent's Hospital Melbourne The Avenue Hospital The Northern Hospital Western Australia Fiona Stanley Hospital Hollywood Private Hospital Joondalup Health Campus St John of God Hospital Murdoch St John of God Hospital Subiaco The Royal Melbourne Hospital Western Hospital Western Private Hospital New Zealand Auckland City Hospital Christchurch Hospital Dunedin Hospital Gisborne Hospital Grace Hospital Grey Base Hospital Hawkes Bay Regional Hospital Mercy Ascot Hospital Middlemore Hospital Nelson Hospital Ormiston Hospital Palmerston North Hospital Rotorua Hospital Southern Cross Auckland Surgical Centre Southern Cross Brightside Hospital Southern Cross Christchurch Hospital Southern Cross Hamilton Hospital Southern Cross Invercargill Hospital Southern Cross New Plymouth Hospital Southern Cross North Harbour Hospital Southern Cross Rotorua Hospital Southern Cross Wellington Hospital Southland Hospital Taranaki Base Hospital Tauranga Hospital Timaru Hospital Waikato Hospital Wairau Hospital Wanganui Hospital
ACSQHC-ARCR-465	Chronic medical and mental health conditions	Ischaemic heart disease; Mental Health	Electronic practice based research network	ePBRN	https://www.sredhconsortium.org/sredh-datasets/epbrn-2019-gp-hospital-linked-dataset	Jitendra Jonnagaddala, University of New South Wales, jitendra.jonnagaddala@unsw.edu.au	2011	The UNSW ePBRN is a virtual clinical registry that integrates general practice and hospital data to drive quality improvement in chronic disease and mental health care. Established in 2010 in South West Sydney (SWS), it links routinely collected Electronic Health Record data from 18 general practices (GP) and 5 hospitals in the Fairfield/Wollondilly region. The purpose of the ePBRN is to collect, link, and analyse real-world primary and hospital care data for a diverse, multi-morbid population, generating evidence to improve care coordination, safety, and outcomes across care settings. The registry monitors longitudinal outcomes and quality indicators, such as hospital admissions and readmissions, emergency presentations, chronic disease management metrics, and care transitions, aligned with national priority areas. The probabilistic linkage of GP and hospital records yields a unified dataset, which is converted to the OMOP common data model, offering a view of continuity of care. Governance is through the Secure Research Environment for Digital Health (SREDH) Consortium’s ePBRN Working Group, with UNSW Sydney, the local Health District, and Primary Health Network as stakeholders. Robust data quality, privacy, and ethics oversight (UNSW ethics approvals, SREDH governance framework) ensure secure use of de-identified data. The registry provides feedback to participating clinicians and disseminates aggregate findings via consortium reports, publications, and community updates, promoting clinician and public access to insights for service redesign and policy evaluation.	Secure Research Environment for Digital Health (SREDH) Consortium	Ethics approval received: HREC/16/LPOOL/83 (NSW Health) ; HC230072 (University of NSW) ; HC230066 (University of NSW)	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executive Shared with consumers Shared with medical colleges Reported to State/Territory health departments Reported in Annual Report Reported in other public reports	Nil	Nil	New South Wales Bankstown-Lidcombe Hospital Bowral Hospital Braeside Hospital Camden Hospital Campbelltown Hospital Fairfield Hospital Liverpool Hospital Other General practices in south west Sydney
ACSQHC-ARCR-467	Diabetes	Diabetes	Australasian Diabetes Data Network	ADDN	https://www.addn.org.au	Meng Tuck Mok, Australasian Diabetes Data Network, info@addn.org.au	2012	The Australasian Diabetes Data Network (ADDN) is a prospective, longitudinal diabetes registry collecting clinical data from people living with diabetes when they attend paediatric and adult diabetes centres. A primary of goal of ADDN is to undertake benchmarking to compare diabetes health outcomes across diabetes centres in Australasia. Benchmarking reports provided to all participating diabetes centres enable critical analysis of their data integrity, which can then be used to identify gaps in their organisation’s processes and enables sharing or standardisation of best practice. The dataset can therefore further our understanding of the influence of different management practices and therapies for diabetes, and the clinical and demographic predictors of clinical outcomes. The core data, collected routinely at clinic visits, include demographic characteristics, body mass index, glycated haemoglobin (HbA1c), blood pressure, lipids, diabetic ketoacidosis, hypoglycaemia, insulin therapy (injections or pumps), use of continuous glucose monitoring (CGM), diabetes complications and co-morbidities. ADDN also follows young people as they transition from paediatric services into adult care and therefore can describe the longitudinal trajectory of type 1 diabetes across the lifespan.	Australasian Paediatric Endocrinology Group and Australian Diabetes Society	Monash Health Human Research Ethics Committee (RES-20-0000-066L) Hunter New England Human Research Ethics Committee (HREC/08/HNE/379) Melbourne Health Human Research Ethics Committee (HREC/16/MH/139) Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/09/QRCH/68/AM04) Women's and Children's Health Network Human Research Ethics Committee (REC1048-06-2019) The Royal Children’s Hospital Human Research Ethics Committee (37124 (amendment 37124D)) South Metropolitan Health Service Human Research Ethics Committee (RGS0000000176) Child and Adolescent Health Service Human Research Ethics Committee (2013051EP) Northern A Health and Disability Ethics Committee (NTX/12/EXP/076/AM03) University of Otago Ethics Committee (HD18/098)	Feedback to contributing clinicians Shared with other clinicians Report on the evaluation of outcomes for the subsidised use of continuous glucose monitoring (CGM) to the Australian Government Department of Health	Nil	Nil	New South Wales Blacktown Mt Druitt Hospital Campbelltown Hospital The Children's Hospital - Westmead Illawarra Shoalhaven, Wollongong Illawarra Shoalhaven - Norwa John Hunter Children's Hospital Liverpool Hospital St George Hospital Westmead Hospital Queensland Mater Private Hospital - South Brisbane Queensland Children's Hospital South Australia Lyell McEwin and Modbury Hospitals Women's and Children's Hospital Victoria Monash Children's Hospital - Clayton Campus The Royal Children's Hospital The Royal Melbourne Hospital - City Campus St Vincent's Hospital, Melbourne Sunshine Hospital - Western Health University Hospital - Barwon Health Western Australia Fiona Stanley Hospital Perth Children's Hospital New Zealand Canterbury District Health Board - Christchurch Starship Children’s Hospital - Auckland Southern District Health Board - Dunedin Waikato District Health Board - Waikato
ACSQHC-ARCR-470	Anaesthetic obstetrics	Maternity	Anaesthetic Benchmarking System - Obstetrics	ABS-Obstetrics	https://clinicalexcellence.qld.gov.au/priority-areas/clinician-engagement/statewide-clinical-networks/anaesthesia-and-perioperative-0	Karen Hamilton, Healthcare Improvement Unit, Clinical Excellence Queensland, Karen.Hamilton@health.qld.gov.au	2018	ABS – Obstetrics is a web-accessible data collection tool designed to capture anaesthetic obstetric clinical information within the labour (maternity) and perioperative environments. The ABS – Obstetrics is clinician driven and has been developed to assist hospitals and health services to achieve clinical practice improvement and provide safer and more satisfying experiences for mothers and babies by: Monitoring and measuring performance against agreed standards Identifying process deficiencies Reducing clinical risk and embed evidence-based practice Improving the quality of care Agreed statewide indicators (based on the Royal College of Anaesthetists, audit recipe of continuous improvement) include: Epidural: % epidural attended within 30 minutes % epidural requests attended within 60 minutes % epidural resited % epidural who sustain an accidental dural puncture % epidural that are deemed unsuccessful (composite endpoint) % satisfied with epidural % epidural providing adequate pain relief within 45 minutes of the epidural being inserted % PDPH requiring EBP Caesarean: % category 1 caesarean sections performed within 30 minutes from booking to delivery time % category 2 caesarean sections performed within 60 minutes from booking to delivery time % category 1 caesarean performed under regional anaesthesia % of all emergency caesarean sections performed under regional % of all elective caesarean performed under regional % of all category 1 caesarean performed under regional that complain of pain % of all emergency caesarean performed under regional that complain of pain % of all elective caesarean performed under regional that complain of pain % category 1 converted from regional to GA % emergency caesarean sections converted from regional to GA % of elective caesarean sections converted from regional to GA % women satisfied with post-op pain relief	Healthcare Improvement Unit, Clinical Excellence Queensland	ABS-Obstetrics is a quality assurance initiative established in accordance with the National Health and Medical Research Council 'Ethical Considerations in Quality Assurance and Evaluation Activities' 2014, Hospital and Health Boards Act 2011, Section 150 - Disclosure for purposes relating to health services and eHealth Architectural and Standard Committee requirements.	Reported in an annual report Shared with clinicians Shared with hospital executive The Anaesthetic Obstetrics Registry Steering Committee reports through the Statewide Anaesthesia and Perioperative Care Clinical Network (SWAPNet)	Nil	Nil	Queensland Atherton Hospital Ayr Hospital Beaudesert Hospital Biloela Hospital Bundaberg Hospital Caboolture Hospital Cairns Base Hospital Charleville Hospital Chinchilla Hospital Cooktown Hospital Dalby Hospital Health Service Gladstone Hospital Gold Coast Hospital Goodiwindi Hospital Gympie Hospital Hervey Bay Hospital Ingham Hospital Innisfail Hospital Ipswich Hospital Kingaroy Hospital & Community Health Centre Logan Hospital Longreach Hospital Mackay Base Hospital Mareeba Hospital Mount Isa Base Hospital Nambour General Hospital Proserpine Hospital Redcliffe Hospital Redland Hospital Rockhampton Base Hospital Roma Hospital Royal Brisbane & Womens Hospital Royal Brisbane Hospital St George Hospital (QLD) Stanthorpe Hospital The Townsville Hospital Thursday Island Hospital Toowoomba Hospital Warwick Hospital
ACSQHC-ARCR-471	Inflammatory arthritis: (rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA) and juvenile idiopathic arthritis (JIA)	Musculoskeletal disorders	Australian Rheumatology Association Database	ARAD	https://www.monash.edu/medicine/sphpm/registries/arad-data	arad@monash.edu	2003	The Australian Rheumatology Association Database (ARAD) was established as a national arthritis database to provide valid and reliable longitudinal clinical data of people with inflammatory arthritis in Australia, with the ultimate aim of providing better care and improving outcomes for patients. It became operational in August 2003. The aims of ARAD are to establish a specific cohort of Australian patients with inflammatory arthritis receiving anti-tumour necrosis factor (TNF) and other biological disease modifying anti-rheumatic drug (bDMARD) therapies together with a group of patients not receiving bDMARDs to determine long-term safety and effectiveness of the biological therapies. ARAD provides reports of patient outcomes to participating rheumatologists with a comparison of grouped de-identified data from other rheumatologists. ARAD also reports on treatment side effects and reasons for stopping or changing therapy. Patient demographic and clinical measures including medication history, adverse events, medical illnesses, malignancy and infections, hospitalisation.	Australian Rheumatology Association	Cabrini Human Research Ethics Committee: 12-23-04-01	Feedback to contributing clinicians Shared with consumers Reported in Annual Report Annual report to Australian Rheumatology Association Board	Disease status, quality of life and physical function (Health Assessment Questionnaire (HAQ) (specific for each disease group), Assessment of Quality of Life Questionnaire (AQoL), SF-36, European Quality of Life and the Paediatric Quality of Life Inventory (for JIA), the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) (for AS)).	Nil	ARAD is based at Monash University and Cabrini Health but collects nationally. Contact ARAD for individual public and private clinicians and hospitals.
ACSQHC-ARCR-477	Liver and intestinal disease	Nil	Australia and New Zealand Liver and Intestinal Transplant Registry	ANZLITR	https://www.anzlitr.org/	Wing-Yee Lo, Austin Health, wingyee.lo@austin.org.au	1986	The Australia and New Zealand Liver and Intestinal Transplant Registry (ANZLITR) is a collaborative effort of the liver transplantation units in Australia (Adelaide, Brisbane, Melbourne, Perth, Sydney) and New Zealand (Auckland). Purpose/aims: Collect, store, analyse and report on activity and outcomes using information about all liver and intestinal transplants across Australia and New Zealand. Support approved research projects wishing to utilise de-identified ANZLITR data. Population: All participants that are wait-listed and those that receive a liver and/or intestinal transplant. All participants that are living liver donors (who donate a part of their liver). Outcomes measures: Waiting list activity and transplantation activity are reported by various factors including: Participant age, age group and age strata Paediatric weight Era of transplant (5 yearly groups) Donor type (deceased/living) Graft type (whole/split/reduced) Graft number (participants may be retransplanted if the first graft fails) Graft survival time Primary disease Indications for retransplantation (graft failure) Causes of death Patient survival time	Austin Health	Monash Health Ref: RES-19-0000612A ERM Reference Number: 55535	Reported in Annual Report Shared with clinicians Shared with consumers Clinicians have access to their own raw data Data sent to Commonwealth Organ and Tissue Authority	Nil	Nil	Victoria Victorian Liver Transplantation Unit, Austin Hospital The Royal Children's Hospital, Melbourne New South Wales Australian National Liver Transplant Unit, Royal Prince Alfred Hospital The Children's Hospital, Westmead Queensland Queensland Children’s Hospital Queensland Liver Transplant Service, Princess Alexandra Hospital Western Australia WA Liver Transplantation Service, Sir Charles Gairdner Hospital South Australia South Australian Liver Transplant Unit, Flinders Medical Centre New Zealand New Zealand Liver Transplant Unit, Auckland City Hospital Starship Children’s Hospital, Auckland
ACSQHC-ARCR-480	Bronchiectasis	Nil	Australian Bronchiectasis Registry	ABR	https://lungfoundation.com.au/research/our-research/bronchiectasis/	A/Prof Lucy Morgan, Macquarie University, abr@lungfoundation.com.au	2015	The Australian Bronchiectasis Registry (ABR) was established in 2015 by Lung Foundation Australia (LFA) and the Australasian Bronchiectasis Consortium (ABC), an independent steering committee composed of Australia’s and New Zealand’s leading respiratory physicians with experience, interest and skill in both clinical management and research. The principal aim of the registry is to identify and collect longitudinal health information on patients with non-cystic fibrosis bronchiectasis in order to facilitate epidemiological research, improve clinical care and maximise opportunities for patients to participate in clinical trials. The registry has international collaborations with US, European and New Zealand researchers to build on the existing evidence base, leverage knowledge, expertise, protocols, and ideas in order to optimise research outcomes through international sharing of data.	Lung Foundation Australia	HREC/15/CRGH/225,Sydney Local Health District Concord Repatriation General Hospital HREC	Reported in public reports Shared with clinicians Shared with consumers Feedback to contributing clinicians Reported to State/Territory health departments on request	QoL-B, Bronchiectasis Health Questionnaire (BHQ) is pending inclusion in upcoming data dictionary update	Nil	New South Wales Concord Repatriation General Hospital Wyong Hospital Westmead Hospital Royal Prince Alfred Hospital Sydney's Children's Hospital, Randwick Victoria Monash Medical Centre Royal Melbourne Hospital V Western Health Footscray Hospital The Royal Children's Hospital Melbourne Queensland The Prince Charles Hospital Queensland Children's Hospital (formerly Lady Cilento Children's Hospital) Mater Misericordiae Ltd, South Brisbane Greenslopes Private Hospital South Australia Royal Adelaide Hospital Western Australia Royal Perth Hospital WA Northern Territory Alice Springs Hospital Royal Darwin Hospital/Menzies School of Health Research
ACSQHC-ARCR-483	Gynaecological Malignancies	Nil	The National Gynae-Oncology Registry	NGOR	https://ngor.org.au/	Registry Manager, Monash University sharnel.perera@monash.edu	2017	The National Gynae-Oncology Registry (NGOR) is a multi-modular clinical quality registry (self-reported) which aims to record diagnostic, treatment and outcome data of patients with newly diagnosed gynaecological cancers. This information is used to monitor and minimise variation in care, improve patient outcomes, and identify trends and potential gaps in service provision. The NGOR was developed by a group of likeminded clinicians in collaboration with the Cancer Research Program in Monash University’s School of Public Health and Preventive Medicine in 2017. The NGOR finalised a list of quality indicators for endometrial cancer module, which was piloted in Victoria and Tasmania. The registry is in the process of developing quality indicators for additional registry modules covering cancers of the endometrium, cervix, vulva and vagina. The Ovarian Cancer Registry (OvCR), a sub-registry of the NGOR, has two active modules for ovarian, tubal and peritoneal cancer, and rare ovarian tumours. A Patient Reported Outcome Measures (PROMs) pilot began at the end of 2022, which aims to test the feasibility and acceptability of a bespoke patient reported outcome (PRO) and patient reported experience (PRE) tool developed through clinical and consumer consultation. The NGOR is endorsed by the Australian Society of Gynaecologic Oncologists (ASGO), >40 gynaecologic oncologists and medical oncologists specialising in gynaecological cancers, and the patient advocacy group Ovarian Cancer Australia. Data are collected primarily from pre-existing clinical unit databases from major gynaecologic cancer treatment centres and private practices. There are a number of private and public health services participating across Victoria, New South Wales, South Australia, Tasmania, Western Australia, Queensland with sites to be added in the Australian Capital Territory in the short-term. The NGOR operates under an opt-out model of recruitment and is governed by a committee of clinical experts, registry experts, a consumer representative, Ovarian Cancer Australia representatives and more.	Monash University	HREC-17-MonH-198	Annual Reports Feedback to contributing clinicians Shared with hospitals principle investigator and data manager Reported in Annual Report OvCR Quarterly Visual Data Reports Provide a visual summary of each health services data in the NGOR’s database Site specific data extracted from the database Send to hospital’s associated investigators and data managers	Nil	Nil	Victoria Cabrini Health Epworth Healthcare Frances Perry House Mercy Hospital for Women Monash Health Peter MacCallum Cancer Centre Peninsula Health Royal Women's Hospital St Vincent's Hospital Melbourne Warringal Private Hospital Werribee Mercy Hospital Western Health New South Wales Chris O'Brien Life House John Hunter Hospital Liverpool Hospital Prince of Wales Private Hospital Royal Hospital for Women Royal North Shore Hospital St George Hospital St George Private Hospital Westmead Hospital Westmead Private Hospital Western Australia Hollywood Private Hospital King Edward Memorial Hospital St John of God Murdoch Hospital St John of God Subiaco Hospital South Australia Burnside Hospital Flinders Private Flinders Medical Centre Royal Adelaide Hospital Tasmania Royal Hobart Hospital Hobart Private Hospital Queensland Royal Brisbane Hospital
ACSQHC-ARCR-485	Cardiac Surgery	Ischeamic heart disease	International CardioCel Outcome Registry	ICOR	Nil	Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au	2020	A quality registry of perioperative surgical data from paediatric cardiac units using CardioCel, a tissue substitute used in the repair of cardiac defects.	Queensland Health	Children’s Health Queensland Hospital and Health Service HREC Ref 18/QRCH/87	Feedback to contributing clinicians Reported in Annual Report Shared with consumers Shared with hospital executive Shared with other clinicians	Nil	Nil	New South Wales The Children’s Hospital at Westmead Children’s, Sydney Queensland Queensland Children's Hospital, Brisbane Victoria The Royal Children’s Hospital, Melbourne Western Australia Perth Children’s Hospital, Perth International Starship Children’s Hospital, Auckland Queen Mary Hospital, Hong Kong Insitut Jantung Negara, Kuala Lumpur
ACSQHC-ARCR-486	Pelvic Floor Procedures, Devices	Maternity	Australasian Pelvic Floor Procedure Registry	APFPR	apfpr.org.au	Aruna Kartik, Monash University, apfpr@monash.edu	2019	The Australasian Pelvic Floor Procedure Registry (APFPR) is a clinician-led national clinical quality registry that monitors and reports on the safety and quality of care relating to pelvic floor procedures including those using pelvic mesh undertaken in Australian hospitals. The APFPR commenced operations in 2021, with data from female patients undergoing a stress urinary incontinence (SUI) procedure (with or without pelvic mesh) and/or a pelvic organ prolapse (POP) procedure (with mesh) at participating sites being eligible for inclusion. Both clinician and patient-reported outcomes are collected by the registry. As at January 2025, data on approximately 1400 procedures has been collected in the registry. The APFPR dataset includes data on pelvic floor disorder diagnoses, surgery and device details including any intra-operative complications, and post-operative outcome and complications at the 6-months follow up. Procedures are categorised into primary procedures and subsequent procedures, the latter performed to address recurrence, or complications of previous procedures. Additional data items are collected for risk adjustment purposes.	Monash University	National Mutual Acceptance Scheme Reference 63247 and Monash Health HREC Reference: RES-20-0000-444A	The APFPR generates annual reports and site/clinician-level reports every six months. with deidentified data also being used for publications and conference presentations.	The APFPR administers the following PROMs at 6, 12, and 24-months after surgery: Patient Global Impression of Improvement (PGI-I) Australian Pelvic Floor Questionnaire (APFQ) EuroQol EQ-5D-5L	Nil	The following sites have received ethics and governance approval to participate in the APFPR as of 22-01-2025. For a current list of approved sites, please visit the APFPR website. Australian Capital Territory Calvary John James Hospital Canberra Private Hospital Canberra Hospital New South Wales St George Hospital (SESLHD) Westmead Hospital (WSLHD) Nepean Hospital (NBMLHD) St George Private Hospital Westmead Private Hospital Concord Repatriation General Hospital (SLHD) Sutherland Hospital (SESLHD) Royal Hospital for Women (SESLHD) John Hunter Hospital (HNELHD) Royal Prince Alfred Hospital (SLHD) North Shore Private Hospital Port Macquarie Private Hospital Dudley Private Hospital Lingard Private Hospital Port Macquarie Base Hospital (MNCLHD) Orange Hospital (WNSWLHD) Queensland Buderim Private Hospital Gold Coast University Hospital Robina Hospital Varsity Lakes Day Hospital Sunshine Coast University Hospital Townsville University Hospital South Australia The Queen Elizabeth Hospital (CALHN) Royal Adelaide Hospital (CALHN) Calvary North Adelaide Hospital Flinders Medical Centre (SALHN) St Andrew’s Hospital Calvary Adelaide Hospital Lyell McEwin Hospital (NALHN) Modbury Hospital (NALHN) Tasmania Royal Hobart Hospital Victoria Bendigo Health Cabrini Health Mercy Health Monash Health St Vincent’s Private Hospital Western Health St John of God Bendigo Hospital Epworth Eastern Epworth Richmond Epworth Freemasons Epworth Geelong St John of God Geelong Hospital Waverley Private Hospital Frances Perry House Peninsula Health Eastern Health Western Australia Hollywood Private Hospital King Edward Memorial Hospital St John of God Subiaco Hospital
ACSQHC-ARCR-487	Heart Transplantation	Adult critical care	Australia and New Zealand Heart Transplant Registry	ANZHTR	www.anzdata.org.au	Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute	2023	The Australia and New Zealand Heart Transplant Registry (ANZHTR) is a newly established registry that will operate as part of the wider group of organ donation and transplantation registries within the Australia and New Zealand Dialysis and Transplant (ANZDATA) registry group. Along with the Australia and New Zealand Lung Transplant Registry (ANZLUNG), these registries serve to fill the void left when the previous Australia and New Zealand Cardiothoracic Organ Transplant Registry ceased operations in 2018. Led by an advisory committee comprising clinical specialists from all heart transplant units across Australia and New Zealand, with collaboration from consumer representatives, this registry aims to become a robust platform for recording and reporting on heart transplantation.	South Australian Health and Medical Research Institute	Women’s and Children’s Local Health Network HREC reference: 2022_HRE00245	Reporting in development Feedback to contributing clinicians Reported in Annual Report	Nil	Nil	New South Wales St Vincent's Hospital (Darlinghurst) Queensland The Prince Charles Hospital Victoria The Alfred The Royal Childrens Hospital, Melbourne Western Australia Fiona Stanley Hospital New Zealand Auckland City Hospital
ACSQHC-ARCR-496	Joint replacement surgery	Musculoskeletal disorders	Barwon Joint Registry	BJR	http://bcore.deakin.edu.au/	Richard Page, St John of God Hospital Geelong, Australia, richard.page@deakin.edu.au	1988	The aim of the Barwon Joint Registry is to provide a mechanism for quality assurance, quality improvement and research. The registry monitors all consenting patients undergoing joint replacement surgery at University Hospital Geelong and hip, knee and shoulder replacements at St John of God Hospital Geelong. The registry is an opt-out, prospective database. Outcomes include patient reported outcomes (pain, function, quality of life), complications, operative details including prosthesis type, patient details and co-morbidities.	Barwon Health, Geelong, Australia. St John of God Hospital Geelong, Australia.	12-95, Barwon Health and St John of God Healthcare	Feedback to contributing clinicians Shared with clinicians Reported in Annual Report Shared with consumers Shared with hospital executive Shared with medical colleges	Oxford Scores (hip, knee, shoulder) EQ-5D-5L Multi-attribute Predictor Tool (MAPT) WOMAC Constant Shoulder Score Quick DASH Patient Expectations Patient Satisfaction	Nil	Victoria University Hospital Geelong St John of God Hospital Geelong
ACSQHC-ARCR-502	Transfusion Medicine	Nil	National Transfusion Dataset	NTD	https://www.transfusiondataset.com/	Tina van Tonder, Transfusion Research Unit, Monash University, sphpm.ntd@monash.edu	2021	The National Transfusion Dataset (NTD) will form the first integrated national database of blood usage in Australia. The NTD aims to collect information about where, when, and how blood products are used across all clinical settings. This will address Australia’s absence of an integrated national database to record blood usage with the ability to link with clinical outcomes. The dataset is an invaluable resource towards a comprehensive understanding of how and why blood products are used, numbers and characteristics of patients transfused in health services, the clinical outcomes after transfusion; and provides support to policy development and research. The NTD was formed through the incorporation of the established Australian and New Zealand Massive Transfusion Registry (ANZ-MTR) and a pilot Transfusion Database (TD) project. The ANZ-MTR has a unique focus on massive transfusion (MT) and contains over 10,000 cases from 41 hospitals across Australia and New Zealand spanning 2011-2018. The TD was a trial extension of the registry that collated data on ALL (not just massive) transfusions on >8000 patients from pilot hospitals. The NTD integrates and expands these databases to provide new data on transfusion practice, using novel approaches to collect data on clinical outcomes. The NTD will link datasets of blood utilisation including prehospital, clinical and registry, with the aim of closing the vital haemovigilance loop. The population captured include all patients (≥18 years old) transfused any type of blood product, and all blood donors (≥18 years old), at participating health services or organisations, from 2017 onward.	Monash University	Alfred Hospital HREC reference: HREC/18/Alfred/85 National Transfusion Dataset (NTD)	Feedback and benchmarking reports to contributing organisations Collaboration with researchers, clinicians and organisations/institutions by data access request Reported to Commonwealth and State/Territory health departments Reported in Annual Reports Reported in other public reports	Nil	Nil	South Australia Flinders Medical Centre Victoria Alfred Health Other contributing organisations and registries Ambulance Victoria South Australian Ambulance Service Lifeblood Myeloma and Related Diseases Registry (MRDR) Aplastic Anaemia Registry (AAR) Lymphoma and Related Diseases Registry (LaRDR) Australian and New Zealand Intensive Care Society (ANZICS)-Adult Patient Database (APD) EXCEL Registry
ACSQHC-ARCR-504	Orthopaedic Joint Replacement	Musculoskeletal disorders	Australian Orthopaedic Association National Joint Replacement Registry	AOANJRR	https://aoanjrr.sahmri.com/	Kathy Hill, khill@aoanjrr.org.au	1999	The AOANJRR is a national Quality Improvement Program to audit the outcome of joint replacement in Australia. It is an initiative of the Australian Orthopaedic Association (AOA) and is permanently funded by the Commonwealth Government. It was established in 1999 and is listed as a Declared Quality Assurance Activity under section 124X of the Health Insurance Act 1973 (QAA 3/2017). The specific objectives are: Establish demographic data related to joint replacement surgery Determine regional variation in practice of joint surgery Identify the demographic and diagnostic characteristics of patients that effect outcomes Analyses the effectiveness of difference prostheses and treatment to specific diagnoses Evaluate the effectiveness of the large variety of prostheses currently on the market by analysing their survival rates Educate orthopaedic surgeons on the most effective prostheses and techniques to improve patient outcomes Provide surgeons with an auditing facility, information that can instigate tracking of patients if necessary.	Australian Orthopaedic Association	Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973 Part VC	Reported in an annual report Reported in other public reports Shared with clinicians Shared with consumers Shared with hospital executive Feedback to contributing clinicians Reported to State/Territory health departments	Standard PROMs collected by the AOANJRR pre-operative and 6 months post-operative EQ5D5L HOOS/KOOS (mid level) Oxford Hip, Knee, Shoulder Additional PROMs for Registry Nested Clinical Trials Forgotten Joint Score HOOS Junior	Nil	Australian Capital Territory Calvary John James Memorial Hospital Calvary Public Hospital Canberra Private Hospital Calvary Bruce Private Hospital The Canberra Hospital The National Capital Private Victoria Austin Health Bairnsdale Regional Health Service Ballarat Day Procedure Centre Ballarat Health Service Bass Coast Regional Health Beleura Private Hospital Bellbird Private Hospital Bendigo Health Care Group Box Hill Hospital Broadmeadows Hospital Cabrini Private Hospital, Brighton Cohuna District Hospital Colac Area Health Dandenong Hospital Djerriwarrh Health Services Bacchus Marsh Campus East Grampians Health Service Echuca Regional Health Epping Private Hospital Epworth Eastern Hospital Epworth Freemasons Epworth Geelong Epworth Richmond Essendon Private Hospital Frankston Private Hospital Footscray Hospital Frankston Hospital Glenferrie Private Hospital Goulburn Valley Health Hamilton Base Hospital Holmesglen Private Hospital John Fawkner Hospital Kyabram District Health Service Knox Private Hospital Latrobe Regional Hospital Linacre Private Hospital Maroondah Hospital Maryvale Private Hospital Masada Private Hospital Melbourne Private Hospital Mildura Base Hospital Mildura Private Hospital Mitcham Private Hospital Monash Medical Centre Clayton Campus Moorabbin Hospital Mulgrave Private Hospital Northeast Health Wangaratta Northpark Private Hospital Peninsula Private Hospital Portland Hospital Ringwood Private Hospital Sandringham Hospital Seymour District Memorial Hospital Shepparton Private Hospital South West Health Care Warrnambool Campus St John of God Ballarat Hospital St John of God Bendigo Hospital St John of God Berwick Hospital St John of God Geelong Hospital St John of God Warrnambool Hospital St Vincent’s Private East Melbourne St Vincent’s Private Fitzroy St Vincent’s Private Kew St Vincents Public Hospital St Vincent's Private Werribee Stawell Regional Health Sunshine Hospital Swan Hill District Health The Alfred The Avenue Hospital The Bays Hospital The Melbourne Eastern Private Hospital The Northern Hospital The Royal Children's Hospital The Royal Melbourne Hospital University Hospital Geelong Barwon Health Vermont Private Hospital Wangaratta Private Hospital Warringal Private Hospital Waverley Private Hospital Werribee Mercy Hospital West Gippsland Healthcare Group West Wimmera Health Service Western Private Hospital Williamstown Hospital Wimmera Health Care Group New South Wales Albury Base Hospital Albury Wodonga Private Hospital Armidale Hospital Armidale Private Hospital Auburn Health Service Bankstown/Lidcombe Hospital Baringa Private Hospital Bathurst Base Hospital Bathurst Private Hospital Belmont Hospital Blacktown Hospital Bowral and District Hospital Brisbane Waters Private Hospital Bowral and District Hospital Broken Hill Health Service Calvary Health Care Riverina Campbelltown Hospital Campbelltown Private Hospital Canterbury Hospital Chris O'Brien Lifehouse Coffs Harbour Health Campus Concord Repatriation Hospital Dalcross Adventist Hospital Delmar Private Hospital Dubbo Base Hospital Dubbo Private Hospital Dudley Private Hospital East Sydney Private Hospital Fairfield Hospital Forster Private Hospital Gosford Hospital Gosford Private Hospital Goulburn Base Hospital Grafton Base Hospital Hawkesbury District Health Service Holroyd Private Hospital Hornsby Ku-Ring-Gai Hospital Hunter Valley Private Hospital Hurstville Private Hospital Insight Clinic Private Hospital Inst of Rheum & Orthopaedic Surgery John Hunter Hospital Kareena Private Hospital Kogarah Private Hospital Lake Macquarie Private Hospital Lakeview Private Hospital Lingard Private Hospital Lismore Base Hospital Liverpool Health Service Macquarie University Hospital Maitland Hospital Maitland Private Hospital Manning Rural Referral Hospital Mayo Private Hospital Mount Druitt Hospital Murwillumbah District Hospital Nepean Hospital Nepean Private Hospital Newcastle Private Hospital North Shore Private Hospital Northern Beaches Hospital Norwest Private Hospital Nowra Private Hospital Orange Health Service Port Macquarie Base Hospital Port Macquarie Private Hospital Royal Newcastle Centre Royal North Shore Hospital Royal Prince Alfred Hospital Ryde Hospital Shellharbour Private Hospital Shoalhaven District Memorial Hospital South East Regional Hospital Southern Highlands Hospital St George Hospital St George Private Hospital St Lukes Care St Vincent’s Private Community Hospital Griffith St Vincents Private Hospital Darlinghurst St Vincents Private Hospital Lismore St Vincents Public Hospital Strathfield Private Hospital Sutherland Hospital Sydney Adventist Private Hospital Sydney Private Hospital Sydney South West Private Hospital Tamara Private Hospital Tamworth Base Hospital The Children's Hospital Westmead The Mater Hospital The Prince of Wales Hospital The Prince of Wales Private Hospital Toronto Private Hospital Tuggerah Lakes Private Hospital Tweed Hospital Wagga Wagga Base Hospital Waratah Private Hospital Warners Bay Private Hospital Westmead Private Hospital Westmead Public Hospital Wollongong Hospital Wollongong Private Hospital Wyong Hospital Queensland Brisbane Private Hospital Bundaberg Base Hospital Buderim Private Hospital Caboolture Private Hospital Cairns Base Hospital Cairns Private Hospital Friendly Societys Hospital Bundaberg Gold Coast Hospital, Robina Campus Gold Coast Private Hospital Gold Coast University Hospital Greenslopes Private Hospital Hervey Bay Hospital Hervey Bay Surgical Centre Hillcrest Private Hospital, Rockhampton Ipswich Hospital John Flynn Hospital, Tugun Logan Hospital Mackay Base Hospital Maryborough Hospital Mater Health Services North Queensland Mater Hospital Brisbane Mater Misericordiae Hospital, Bundaberg Mater Misericordiae Hospital, Gladstone Mater Misericordiae Hospital, Mackay Mater Misericordiae Hospital, Rockhampton Mater Private Hospital Brisbane Mater Private Hospital Redland Mater Private Hospital Springfield Nambour General Hospital Nambour Selangor Private Hospital Noosa Hospital North West Private Hospital Peninsula Private Hospital Pindara Private Hospital Prince Charles Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Queensland Children’s Hospital Redcliffe Hospital Redland Public Hospital Rockhampton Base Hospital Royal Brisbane and Women's Hospital Sunshine Coast University Hospital St Andrews Hospital, Toowoomba St Andrews Private Hospital, Ipswich St Andrews War Memorial Hospital, Spring Hill St Stephen's Private Hospital St Vincent’s Private Hospital Northside St Vincents Hospital Sunnybank Private Hospital Sunshine Coast University Hospital Sunshine Coast University Private Hospital Toowoomba Hospital Townsville Hospital Wesley Hospital Northern Territory Alice Springs Hospital Darwin Private Hospital Royal Darwin Hospital Western Australia Albany Regional Hospital Armadale Health Service Bethesda Hospital Bethesda Hospital Bethesda Hospital Bunbury Regional Hospital Busselton Health Campus Fiona Stanley Hospital Fremantle Hospital Geraldton Hospital Hollywood Private Hospital Joondalup Health Campus Kalgoorlie Health Campus Mount Hospital Osborne Park Hospital Peel Health Campus Rockingham General Hospital Royal Perth Hospital Sir Charles Gairdner Hospital St John of God Bunbury Hospital St John of God Geraldton Hospital St John of God Midland Hospital St John of God Mt Lawley Hospital St John of God Murdoch Hospital St John of God Subiaco Hospital Waikiki Private Hospital South Australia Ashford Community Hospital Burnside War Memorial Hospital Calvary Adelaide Hospital Calvary Central Districts Hospital Calvary North Adelaide Hospital Clare Hospital and Health Services Flinders Medical Centre Flinders Private Hospital Gawler Health Services Glenelg Community Hospital Lyell McEwin Hospital Modbury Public Hospital Mount Barker District Soldiers Memorial Hospital Mount Gambier Hospital Murray Bridge Soldiers Memorial Hospital Naracoorte Health Service Noarlunga Hospital North Eastern Community Hospital Parkwynd Private Hospital Port Augusta Hospital Port Lincoln Hospital Port Pirie Regional Health Service Queen Elizabeth Hospital Riverland General Hospital Royal Adelaide Hospital South Coast District Hospital Sportsmed SA St Andrews Private Hospital Stirling District Hospital The Memorial Hospital Western Hospital Whyalla Hospital and Health Service Women's and Children's Hospital Tasmania Calvary Health Care St Lukes Calvary Health Care, St Johns Calvary Hospital Hobart Private Hospital Launceston General Hospital North-West Private Hospital North West Regional Hospital, Burnie Campus Royal Hobart Hospital
ACSQHC-ARCR-63	Neuroendocrine Cancer	Nil	Planning of treatment and research for Neuroendocrine tumours (NETS) in Australia	PLANET Registry	https://neuroendocrine.org.au/planetregistry	Meredith Cummins, NeuroEndocrine Cancer Australia, meredith@neuroendocrine.org.au	2018	The PLANET registry is a data repository for clinical information for patients with neuroendocrine tumours (NET). It is a system designed to facilitate the exchange of information about NET patients between clinical professionals, and provides mechanisms to collect valuable information for research, and further studies. NeuroEndocrine Cancer Australia, in collaboration with the eResearch department at Melbourne University, have developed this world class NET registry and mobile app designed to securely house NET data in one location.	Neuroendocrine Cancer Australia	HREC/18/PMCC/142; Peter MacCallum HREC	Feedback to contributing clinicians Shared with consumers Shared with medical colleges Shared with other clinicians	Eastern Cooperative Oncology Group (ECOG) 30 European Organisation for Research and Treatment of Cancer (EORTC) Gastrointestinal Neuroendocrine (GINET) 21 Bristol Stool Scale and frequency ECOG performance status Monthly patient vitals (height, weight and BMI)	Nil	New South Wales GenesisCare Frenchs Forest GenesisCare North Shore Royal North Shore Hospital Queensland Royal Brisbane & Womens Hospital South Australia The Queen Elizabeth Hospital Victoria Peter MacCallum Cancer Centre Western Australia Fiona Stanley Hospital
ACSQHC-ARCR-630	Systemic vasculitis, focused on Anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis and giant cell arteritis	Musculoskeletal disorders; Renal disease	The Australia and New Zealand Vasculitis Quality and Disease Registry	ANZVASC-QDR	Under development	Richard Kitching, richard.kitching@monash.edu, Monash University	2023	The ANZVASC-QDR has been designed to record all types of systemic vasculitis. Its initial focus will be on anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis, with large vessel vasculitis, including giant cell arteritis to follow. It aligns with the priority clinical domains of musculoskeletal disease and renal disease. The ANZVASC-QDR data set will include relevant demographic and social data, clinical data and investigations at diagnosis and enrolment, as well as routine clinical data from each annual review, as the results of annual routine investigations and other investigations obtained as part of routine care, as well as Patient Reported Outcomes (PRO) and Quality of Life (QOL) data. In some instances, data from other clinical reviews will be recorded. Multisite ethics and National Mutual Acceptance approval for the project has been obtained at Monash Health. A separate approval has been obtained for New Zealand. Monash University is the Data Custodian with input from the Australia and New Zealand Vasculitis Society (ANZVASC). The planned impact of the registry is as follows: Provision of clinical quality data to participating units to reduce variation in care for people with vasculitis, and improve care and outcome Improve understanding of the quality of life of people with vasculitis and factors affecting these conditions Establish a resource to enable research on vasculitis in Australia and New Zealand Serve as a platform for registry linked clinical trials and surveillance of new therapies and practices Improve training of those involved in the care of people with vasculitis.	Monash University	Monash Health Reference: RES-21-0000-679A	Feedback to contributing clinicians	AAV-PRO (ANCA-associated vasculitis patient reported outcomes) EQ-5D-5L (EuroQol 5-Dimension 5-level) IPAQ-SF (International Physical Activity Questionnaire - Short Form)	Nil	New South Wales The Prince of Wales Hospital Westmead Hospital South Australia The Queen Elizabeth Hospital Royal Adelaide Hospital Victoria Monash Medical Centre - Clayton Campus New Zealand Auckland Hospital Waikato Hospital
ACSQHC-ARCR-641	Lung Transplantation	Adult critical care	Australia and New Zealand Lung Transplant Registry	ANZLUNG	www.anzdata.org.au	Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute	2023	The Australia and New Zealand Lung Transplant Registry (ANZLUNG) is a newly established registry that will operate as part of the wider group of organ donation and transplantation registries within the ANZDATA group. Along with the Australia and New Zealand Heart Transplant Registry (ANZHTR) these registries serve to fill the void left when the previous Australia and New Zealand Cardiothoracic Organ Transplant Registry ceased operations in 2018. Led by a steering committee comprising clinical specialists from all lung transplant units across Australia and New Zealand, with collaboration from consumer representatives, this registry aims to become a robust platform for recording and reporting on lung transplantation.	South Australian Health and Medical Research Institute	Central Adelaide Local Health Network HREC reference 2023_HRE00270	Reporting in development Feedback to contributing clinicians Reported in Annual Report	Nil	Nil	New South Wales St Vincent's Hospital (Darlinghurst) Queensland The Prince Charles Hospital Victoria The Alfred Western Australia Fiona Stanley Hospital New Zealand Auckland City Hospital
ACSQHC-ARCR-66	ST-elevation Myocardial Infarction	Ischemic heart disease	Victorian Ambulance STEMI Quality Initiative	VASQI	Nil	Ashanti Dantanarayana, Ambulance Victoria, Ashanti.Dantanarayana@ambulance.vic.gov.au	2019	Purpose: Ambulance Victoria (AV) is the state-wide emergency medical service for almost 6.6 million Victorian residents. Historically paramedic collected electronic patient care records are uploaded and stored in the AV clinical data warehouse and data are used to report on clinical quality improvement and audit, operational improvement, and for research and evaluation. ST-elevation myocardial infarction (STEMI) represents an important cohort needing additional time-critical monitoring, assessment and management to ensure optimal patient outcomes. AV has established the Victorian Ambulance STEMI Quality Initiative (VASQI) for this purpose. Aims: AV STEMI management has grown in complexity in recent years, including the service-wide rollout of pre-hospital 12-lead ECG, administration of aspirin and heparin, and pre-hospital thrombolysis in selected rural/remote patients. Assessing the quality and safety of these complex interventions is vital and it is the aim of VASQI to undertake these assessments, monitor safety and progress, provide vital feedback to the paramedic workforce and measure patient outcomes. Population: Eligible patients are those attended by AV and treated for a paramedic suspected STEMI. Outcomes: Monitor the quality and safety of treatment and procedures performed by paramedics on patients presenting with cardiovascular symptoms consistent with STEMI. This includes linkage with hospital treatment and outcome data which will form part of a feedback circle to assess accuracy of diagnosis.	Ambulance Victoria	Monash University HREC (MU-HREC) Reference number: 13926 Alfred Health HREC Reference number: 597-19	Feedback to paramedic workforce via Regional Reporting Feedback to VASQI Working Group Feedback to VASQI Steering Committee Public annual report	Nil	Nil	Victoria Ballarat Health Services Barwon Health Bendigo Health - Bendigo Hospital Eastern Health Melbourne Health Monash Medical Centre - Clayton Campus Northern Health Peninsula Health St Vincent's Hospital (Melbourne) Ltd The Alfred Western Health
ACSQHC-ARCR-675	Airway management in the emergency department	Adult critical care	The Australian and New Zealand emergency department Airway Registry	ANZEDAR	https://aci.health.nsw.gov.au/networks/eci/research/airway-registry	Hatem Alkhouri, NSW Agency for Clinical Innovation, ACI-AirwayRegistry@health.nsw.gov.au	2013	The Airway Registry includes airway management data from the complete range of rural, regional and metropolitan emergency departments in NSW and more broadly in Australia and New Zealand. Some of the metrics that it includes are patient demographics, indication for intubation, the rate of first pass success and the rate of complications. Objectives: The Airway Registry has two main objectives: Primary Objective: To monitor the safety of emergency airway management across participating sites, including first pass success rates, and the incidence of adverse events. Secondary Objectives: To monitor the process of care involved with emergency airway management across participating sites, focused on potential contributors to adverse events, use safety data to assess variation in practice, benchmark care and evaluate the impact of quality improvement interventions over time and provide baseline data informing the design and conduct of intervention studies. Participating sites receive bench-marking reports allowing them to compare their local performance against similar departments, identifying areas of strength and areas needing improvement.	NSW Agency for Clinical Innovation	Northern Sydney Local Health District Human Research Ethics Committee reference: 1209-318 M	RECap built in reports Power BI Bench-marking Reports Findings published in peer reviewed journal manuscripts	Nil	Nil	Australian Capital Territory Calvary Private Hospital New South Wales Albury Wodonga Health Belmont Hospital Blacktown Hospital Bowral Hospital Byron Central Hospital Canterbury Hospital Coffs Harbour Base Hospital Dubbo Base Hospital Hornsby Ku-Ring-Gai Hospital John Hunter Hospital Royal Newcastle Centre Kempsey District Hospital Lismore Base Hospital Liverpool Hospital Macksville District Hospital Manning Rural Referral Hospital (Taree) Mona Vale Hospital Moruya District Hospital Mount Druitt Hospital Murwillumbah District Hospital Nepean Hospital Northern Beaches Hospital Orange Health Service Port Macquarie Base Hospital Prince Of Wales Hospital Queanbeyan District Hospital Royal North Shore Hospital Royal Prince Alfred Hospital St George Hospital St Vincent's Hospital (Darlinghurst) The Maitland Hospital The Sutherland Hospital The Tweed Hospital Northern Territory Gove District Hospital Queensland Cairns Base Hospital Caloundra Hospital Gold Coast University Hospital Hervey Bay Hospital Mackay Base Hospital Mater Private Hospital (South Brisbane) Mount Isa Hospital Princess Alexandra Hospital Queen Elizabeth II Jubilee Hospital Queensland Children's Hospital Redcliffe Hospital Rockingham General Hospital Sunshine Hospital Townsville University Hospital Westmead Hospital Wollongong Hospital Wyong Public Hospital South Australia The Royal Adelaide Hospital Tasmania North West Regional Hospital Royal Hobart Hospital Victoria Bendigo Health - Bendigo Hospital Box Hill Hospital Footscray Day Surgery Latrobe Regional Hospital Maryborough Hospital Monash Medical Centre - Moorabbin Campus The Northern Hospital The Royal Childrens Hospital Western Australia Albany Hospital Broome Hospital Fiona Stanley Hospital Kalgoorlie Health Campus Perth Children’s Hospital Sir Charles Gairdner Hospital St John Of God Midland Public & Private Hospital New Zealand Auckland City Hospital Christchurch Hospital Hawke's Bay Hospital Middlemore Hospital Nelson Hospital Tauranga Hospital Waikato Emergency Department Whanganui Hospital
ACSQHC-ARCR-696	Interstitial Lung Disease	Nil	Australasian Interstitial Disease Registry	AILDR	https://www.sydney.edu.au/medicine-health/our-research/research-centres/aildr.html	AILDR Project Manager, The University of Sydney, aild.registry@sydney.edu.au	2016	The Australasian Interstitial Lung Disease Registry (AILDR) recruits patients with all ILD subtypes, reflecting real world practice at clinics across Australia and New Zealand with dual objectives: To provide a valuable resource for high quality ILD research To improve care for ILD patients across Australia and New Zealand. The AILDR was established in response to growing calls for a national clinical registry to better understand Interstitial Lung Disease patterns, standardise care and provide relevant longitudinal data. Commencing with four pilot sites in 2016, there are now 23 sites participating across Australia and New Zealand with more than 3000 participants recruited and followed-up regularly every 6 months. Inclusion criteria for participants includes age 18 years of age, ability to provide written informed consent, and diagnosis of ILD according to American Thoracic Society/European Respiratory Society (ATS/ERS) criteria. The core data recorded on the registry includes: - Basic demographic data - Clinical data - Medications - Oxygen use - Pulmonary function tests - Other Investigations.	The University of Sydney	Sydney Local Health District HREC reference: X16-0275 & 2019/ETH06440	Feedback to contributing clinicians	The King's Brief Interstitial Lung Disease questionnaire (K-BILD) Cough VAS Severity and Impact (Cough VAS) Modified Medical Research Council (mMRC) Dyspnoea Scale EuroQol- 5 Dimension (EQ-5D-5L) Fatigue Assessment Scale (FAS) ILD Exposure Questionnaire (ILDEQ)	Nil	New South Wales Concord Repatriation Hospital John Hunter Hospital Royal Prince Alfred Hospital The Sutherland Hospital Westmead Hospital Queensland Princess Alexandra Hospital The Prince Charles Hospital South Australia Flinders Medical Centre The Queen Elizabeth Hospital The Royal Adelaide Hospital Victoria Austin Hospital Box Hill Hospital Royal Melbourne Hospital St Vincent's Hospital (Melbourne) Ltd The Alfred Western Hospital Western Australia Fiona Stanley Hospital Royal Perth Hospital Sir Charles Gairdner Hospital St John Of God Hospital, Subiaco New Zealand Auckland City Hospital, Christchurch Hospital, Waikato Hospital
ACSQHC-ARCR-760	Early Psychosis	Mental Health	Australian Early Psychosis Collaborative Consortium (AEPCC) Clinical Quality Registry	AEPCC CQR	https://aepcc.org.au/programs/clinical-quality-registry/	Jo Fitzsimons, Orygen, aepcc-cqr@orygen.org.au	2024	The AEPCC CQR (self-reported) aims to improve the quality of early psychosis care by monitoring the quality of early psychosis treatment within Australia. Using data collected in the registry we will identify areas for improvement and investigate the impact of changes in practice on the short-, mid- and long-term outcomes for young people receiving care for early psychosis. The CQR will include participants who are patients of an early psychosis service that have agreed to participate in the AEPCC CQR; and 1) have been identified as early or emerging psychosis either: being at risk of developing a first episode of psychosis or 2) are experiencing a first episode of psychosis (FEP) as determined through relevant clinical assessment. Outcomes include: Duration of untreated psychosis, change in symptoms (BPRS) (including if transitioned to FEP), change in functioning (SOFAS), recovery and quality of life (ReQoL), hospitalisations related to early psychosis diagnosis, medications prescribed, physical health, return to or remaining in education/employment.	Australian Early Psychosis Collaborative Consortium (AEPCC)	The Alfred Human Research Ethics Committee Reference: 70474, Project 668/22	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executive Shared with consumers Shared with medical colleges Reported to State/Territory health departments Reported in Annual Report	Recovering Quality of Life Questionnaire (ReQoL)	Nil	New South Wales Program for Early Intervention and Prevention of Disability (PEIPOD) - St Vincent's Hospital Early Psychosis Program (EPP) - South Eastern Sydney Local Health District Northern Territory Headspace Early Psychosis - Darwin South Australia Headspace Early Psychosis – Adelaide Victoria Early Psychosis Prevention and Intervention Clinic (EPPIC) - Orygen
ACSQHC-ARCR-818	Corneal Transplantation	Nil	The Australian Corneal Graft Registry	ACGR	https://www.flinders.edu.au/fhmri-eye-vision/corneal-graft-registry	Emeritus Professor Keryn Williams, keryn.williams@flinders.edu.au, College of Medicine and Public Health, Flinders University	1985	The ACGR is a clinical registry that follows the outcomes of the surgical procedures of corneal transplantation. A national registry established in May 1985, it currently holds records of over 47,000 surgeries submitted on a voluntary basis by over 1000 ophthalmic surgeons working in both public and private practices. New records accrue at a rate of approximately 2000 per year. Follow-up is requested every 12-18 months until graft failure, loss-to-follow-up or recipient death. Information is collected on the recipient, the corneal donor, practices in the Eye Banks, and details of the surgical procedure. The major outcome measures are graft survival and visual outcomes. Amalgamated, de-identified analyses are provided every two years.	Flinders University	Southern Adelaide Clinical Human Research Ethics Committee; HREC Reference: 2021/HRE00176	Feedback to contributing clinicians Shared with other clinicians Shared with consumers Shared with medical colleges Reported in Annual Report Reported in other public reports Other: A presentation is given each year at the Annual Cornea and Eye Bank meeting and posted on the ACGR website. De-identified, amalgamated reports are posted freely online. Manuscripts are published in the international literature. Individualised reports are provided to individual ophthalmic surgeons annually.	Nil	Nil	A list of contributing surgeons can be found in the freely available major reports, the most recent of which is at: https://doi.org/10.25957/9vyp-0j93 Further information is available from the SAHMRI Registry Centre https://sahmri.org.au/research/programs/registry-centre
ACSQHC-ARCR-836	Lung Cancer	High burden cancers	Lung cancer clinical quality data platform	LUCAP	https://lucap-au.com/	Fraser Brims, Curtin University, fraser.brims@curtin.edu.au;lucap@curtin.edu.au	2022	LUCAP is a clinical quality registry (self-reported) for lung cancer care in Australia. The platform enables the performance of continuous audit cycles against endorsed key clinical quality indicators (CQI) of care to identify where significant improvements can be made to deliver consistent, world-class care. The type of information LUCAP collects includes: how quickly people get tests what sort of tests are performed how quickly people get treatments. Ultimately, LUCAP aims to improve the quality of care and outcomes for lung cancer patients in Australia by developing a culture of accountability and responsibility in institutions that treat lung cancer in Australia. The key objectives of LUCAP are to: Implement a standardised and high quality data collection process across all jurisdictions in Australia Enable the generation of risk-adjusted reports on the quality of lung cancer care across Australia for consumers, healthcare providers and researchers, and provide close-to real time dashboards to facilitate clinical and quality improvement initiatives Enable the generation of high-quality research data for observational and/or registry-based studies, facilitating and enhancing novel research and new treatment approaches for lung cancer patients. LUCAP is currently being implemented in the hospitals listed below, with the intention to expand to all hospitals across Australia (and New Zealand) in the future. LUCAP is supported by Cancer Australia and the peak lung health body the Lung Foundation Australia (LFA). The LUCAP Protocol is endorsed by the Thoracic Society of Australia and New Zealand (TSANZ).	Curtin University	Sir Charles Gairdner & Osborne Park Health Care Group HREC: reference RGS0000004404	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executive Shared with consumers Reported in Annual Report Open access journal articles Oral presentations at research conferences	Not at this stage, but potentially in the future	Not at this stage, but potentially in the future	New South Wales Campbelltown Hospital Liverpool Hospital St Vincent's Hospital (Darlinghurst) Wollongong Hospital Queensland Royal Brisbane & Women's Hospital Sunshine Coast University Hospital The Prince Charles Hospital Western Australia Fiona Stanley Hospital Royal Perth Hospital Sir Charles Gairdner Hospital St John Of God Midland Public & Private Hospital
ACSQHC-ARCR-879	Postoperative Quality of Recovery	Nil	The Postoperative Quality of Recovery Registry	PostopQRS Registry	https://www.postopqrs.com/	Colin Royse, Melbourne Health, University of Melbourne, research@heartweb.com	2020	The objective of the registry is to provide a platform for participating sites to enter data to measure post-operative quality of recovery after a surgical procedure. These data will be used to answer multiple research questions in the future, as well as to provide benchmarking data for recovery for specific operations. Specific research questions that will utilise the registry data will require separate HREC approval. The primary outcome measure tool is the Postoperative Quality of Recovery Scale (PostopQRS).	Melbourne Health	Ethics reference: 2020.07, Melbourne Health Human Research Ethics Committee	Feedback to contributing clinicians Shared with other clinicians Shared with medical colleges	The Postoperative Quality of Recovery Scale (PostopQRS) is a survey to measure recovery from the patient's perspective. It is initially performed before surgery to measure the patient's baseline condition, and then recovery is measured at multiple time points after surgery and compared to their pre-surgery baseline. In simple terms, recovery occurs when the patient has returned to their baseline condition or better. The scale is multidimensional, capturing recovery in domains such as physiological, emotional, cognitive (brain function), pain and nausea and their ability to perform activities of daily living.	Nil	Victoria Peter Maccallum Cancer Centre Royal Melbourne Hospital - City Campus The Royal Women's Hospital
ACSQHC-ARCR-896	Pregnancy, labour, birth, and immediate newborn outcomes	Maternity	Data for Maternity Excellence: Australian Maternity Care Clinical Quality Registry	Data4ME	Nil. The registry is currently accessed through logging in to the WHA member’s website and then opening the Data4ME portal. So no public website link is currently available.	Barb Vernon Chief Executive Officer, Women's Healthcare Australasia, barb.vernon@wcha.asn.au	2018	Data for Maternity Excellence: the Australian Maternity Care Registry aims to support continuous improvement in pregnancy, labour and birth care and outcomes for women and newborns through assisting healthcare services to benchmark their performance with peers, identify trends over time, and identify and respond to unwarranted variation. The registry is hosted by Women’s Healthcare Australasia (WHA), a not for profit national network of more than 150 maternity care hospitals from all jurisdictions. It currently captures up to 83% of annual public births. Clinical data on pregnancy, labour and birth care for women giving birth in Australia is collected, analysed and provided back to participating services on more than 70 indicators. Dashboards assist participating services to identify trends in care over time, variation from peer services caring for similar women, and whether improvement efforts are having intended effects. Annual reports provided to participating hospitals are held in high regard. Services review their report to identify areas of strength in their care of women and newborns, and areas that may warrant further attention and/or improvement. WHA assists participating services to network with peers demonstrating stronger performance on areas they may wish to strengthen or improve. It also facilitates collaborative quality improvement initiatives, whereby teams from multiple services work together at the same time on improving processes and outcomes of care in relation to a given cohort of women or adverse outcome. The registry is now offering access to a secure online portal for participating hospitals where data is being updated monthly or quarterly, depending on the capacity of the participating hospitals. A growing suite of analytics is being developed to help clinicians understand how to optimise outcomes for different cohorts of women with shared characteristics or who experience a common adverse outcome. Dashboards also support assessment of performance over time against national clinical care standards such as the Safer Baby Bundle related to stillbirth prevention. Data in the registry has recently been opened to researchers for analysis and peer reviewed publication.	Women's Hospitals Australasia Inc, trading as Women's Healthcare Australasia	WHA holds signed Data Sharing Agreements with the CEO or their delegate of each participating Health Service. The Agreements stipulate the terms on which de-identified patient level data is shared with WHA and how WHA may store, manage, and use the data for benchmarking, quality improvement and/or research purposes. WHA has obtained ethics approval for one major study related to this dataset from the HREC at the Royal Brisbane and Women’s Hospital, currently the only NHMRC accredited HREC for Women’s Health research. The approved research project is Project ID: 102817; HREC/2023/MNHB/102817; A quantitative evaluation of the Every Week Counts national program to reduce early and preterm birth in Australia.	Feedback to contributing clinicians Shared with other clinicians Shared with hospital executives Reported in annual Benchmarking reports	Nil. We are committed to collecting and reporting on PROMS once a data source becomes readily available.	Nil. We are committed to collecting and reporting on PREMS once a data source becomes readily available.	Australian Capital Territory Centenary Hospital for Women and Children North Canberra Hospital New South Wales Armadale Health Service Bankstown-Lidcombe Hospital Bowral & District Hospital Broken Hill Base Hospital Campbelltown Hospital Cooma District Hospital Fairfield Hospital Gosford Hospital Goulburn District Hospital Hornsby Ku-Ring-Gai Hospital Liverpool Hospital Moruya District Hospital Queanbeyan District Hospital Royal Hospital For Women Royal North Shore Hospital St George Hospital South East Regional Hospital Bega The Sutherland Hospital Westmead Hospital Wyong Public Hospital Northern Territory Royal Darwin Hospital Queensland Caboolture Hospital Chinchilla Hospital Dalby Hospital Health Service Gold Coast University Hospital Goondiwindi Hospital Gympie Hospital Kingaroy Hospital & Community Health Centre Mater Mother's Hospital Redlciffe Hospital Royal Brisbane & Womens Hospital Stanthorpe Hospital Sunshine Coast University Hospital Toowoomba Hospice Townsville Hospital Warwick Hospital South Australia Flinders Medical Centre Lyell Mcewin Hospital Riverland General Hospital Women's & Children's Health Network Yorke & Northern LHN, SA Tasmania Launceston General Hospital Northwest regional hospital Royal Hobart Hospital Victoria Angliss Hospital Barwon Health - Geelong Hospital Campus Bendigo Health - Bendigo Hospital Box Hill Hospital Castlemaine Health Frankston Hospital Latrobe Regional Hospital Mercy Hospital For Women Portland District Health Royal Children's Hospital - Travancore Campus Royal Women's Hospital Swan Hill District Hospital Werribee Mercy Hospital Western Australia Academy Day Hospital St John of God Midland Hospital WA Country Health Service Women's & Newborns Health Service WA
ACSQHC-ARCR-915	Organ donation	Adult critical care	Australia and New Zealand Organ Donation Registry	ANZOD	www.anzdata.org.au	Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute	1989	The Australia and New Zealand Organ Donation Registry ANZOD collects and reports on all organ, eye and tissue donation, that is used to produce a wide range of statistics for the local, national and international community. Established in 1989, the Registry continues to be a source of information for clinicians, health care educators, researchers, epidemiologists, scientific studies and the general community.	South Australian Health and Medical Research Institute	Mechanism for approval is jurisdictional health information agreements.	Reported in Annual Report Reported in other public reports	Nil	Nil	DonateLife New South Wales DonateLife Northern Territory DonateLife Queensland DonateLife South Australia DonateLife Tasmania DonateLife Victoria DonateLife Western Australia Organ Donation New Zealand
ACSQHC-ARCR-99	Cardiothoracic Surgery/Cardiopulmonary Bypass	Ischaemic heart disease; Adult critical care	The Australian and New Zealand Collaborative Perfusion Registry	ANZCPR	https://www.anzcpr.org	Rob Baker, Flinders Medical Centre, rob.baker@sa.gov.au	2005	A collaborative project conducted to improve patient outcomes and foster and grow high quality research by the establishment and maintenance of a prospective database of cardiac surgical procedures performed in centres throughout Australia and New Zealand. Vision: Empower all cardiac surgery team members to improve the understanding and practice of cardiopulmonary bypass to improve cardiac surgical patient outcomes. Mission: Maintain and develop the Australian and New Zealand Collaborative Perfusion Registry for cardiac surgical procedures performed throughout Australia and New Zealand. Promote the reporting and understanding of the effect of cardiopulmonary bypass on patient outcomes through encouraging evidence based practices, quality assurance, quality improvement and research. Aims: Cultivate and grow a non-identifiable data source to be known as the Australian and New Zealand Collaborative Perfusion Registry (ANZCPR) Encourage adoption of evidence based practices through the collection and reporting of data relevant to the practice of cardiopulmonary bypass Empower cardiac surgical team members through the utilisation of the data to understand clinical practice, provide a foundation for research, and to facilitate quality improvement and benchmarking. Objectives: ANZCPR aims to empower cardiac surgical team members through the collection and reporting of data relevant to the practice of cardiopulmonary bypass. This will be achieved through the maintenance of a prospective data set on cardiac surgical procedures performed in multiple sites throughout Australia and New Zealand and through the collaborative network of perfusion and interested researchers, who share the commitment to cooperation and collaboration in the pursuit of excellence in perfusion.	ANZCPR Steering Committee	Southern Adelaide Clinical Human Research Ethics Committee HREC/15/SAC/341	Reported in Annual Report Shared with clinicians Shared with hospital executive Feedback to contributing clinicians Reported to state/territory health departments Annual Perfusion Downunder Winter Meeting	Nil at this time, under review for inclusion	Nil at this time, under review for inclusion	New South Wales Westmead Hospital, Westmead South Australia Ashford Hospital, Ashford Flinders Medical Centre, Bedford Park Flinders Private Hospital, Bedford Park Tasmania Calvary Lenah Valley, Hobart Royal Hobart Hospital, Hobart Victoria Alfred Hospital, Melbourne Cabrini Hospital, Malvern New Zealand Auckland City Hospital, Auckland