Australian Register of Clinical Registries

The Commission has developed the Australian Register of Clinical Registries 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. Clinical registries will be added to this list as the content of each registered clinical registry is curated and prepared for publishing.

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

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 are provided to the 54 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

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
  • Wimmera Base Hospital

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

  • Country Health
  • Flinders Medical Centre
  • Royal Adelaide Hospital
  • Women’s and Children’s Hospital

Western Australia

  • Fiona Stanley Hospital
  • Fremantle Hospital
  • King Edward Memorial Hospital
  • Royal Perth Hospital
  • St John of God, Subiaco
  • Sir Charles Gairdner Hospital

Tasmania

  • Launceston General 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

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

Hilarie Tardif, Australian Health Services Research Institute, 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

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

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

Tina van Tonder, Transfusion Research Unit, Monash University, med-ttpregistry@monash.edu

2009

The aims of the TMA Registry are to:

  • better define the incidence, natural history and clinical outcome of TTP and other TMAs
  • provide information on the range of therapeutic strategies being employed in the treatment of TMA patients
  • explore factors influencing clinical outcomes
  • better define optimal management of TMA patients

Data on all patients suffering from a TMA are collected and entered onto a central database.

Demographics, diagnoses, clinical and laboratory and imaging results, therapy, complications of disease and therapy, transfusion support requirements, and clinical outcomes are collected.

Monash University Monash University HREC: CF08/1674 - 2008000856
  • Feedback to contributing clinicians
  • Reported in Annual Report
  • Shared with other clinicians

Nil

Nil

Victoria

  • Alfred Hospital
  • Austin Hospital
  • Box Hill Hospital
  • Geelong Hospital
  • Monash Children’s Hospital
  • Monash Medical Centre
  • Royal Children’s Hospital Melbourne
  • Royal Melbourne Hospital
  • St Vincent’s Hospital Melbourne
  • Western 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

Australian Capital Territory

  • Canberra Hospital

Western Australia

  • Fiona Stanley Hospital
  • Royal Perth Hospital
  • Sir Charles Gardiner Hospital

South Australia

  • Flinders Medical Centre
  • Queen Elizabeth Hospital
  • Royal Adelaide Hospital

Queensland

  • Gold Coast Hospital 
  • Lady Cilento Children’s Hospital
  • Mater Hospital Brisbane
  • Princess Alexandra Hospital
  • Royal Brisbane & Women’s Hospital
  • Townsville Hospital

Tasmania

  • Launceston General
  • Royal Hobart Hospital

Northern Territory

  • Royal Darwin Hospital

New Zealand

  • Starship Children’s Hospital
ACSQHC-ARCR-037 Upper Gastrointestinal Cancer Registry – Oesophagogastric Module Nil UGICR – Oesophagogastric Module Oesophagogastric Cancer

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 High burden cancers Australian Comprehensive Cancer Outcomes and Research Database (ACCORD) Sarcoma Database ACCORD Sarcoma Database

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 ANZCOTR

Ross Pettersson, St Vincents Hospital, Sydney, ross.pettersson@svha.org.au

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

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

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

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

Emily McKie, Monash University,emily.mckie@monash.edu

2011

The Australia New Zealand Trauma Registry (ATR) collects 67 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 27 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.

The Australian Trauma Quality Improvement Program (AusTQIP) Steering Committee owns the registry data. Monash University has been contracted by the National Trauma Research Institute to be the data custodians. 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 

Queensland

  • Gold Coast University Hospital
  • Princess Alexandra Hospital
  • Queensland Children’s Hospital
  • Royal Brisbane and Women’s Hospital
  • Sunshine Coast University Hospital
  • Townsville 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

South Australia

  • Flinders’ Medical Centre
  • Royal Adelaide Hospital
  • Women’s and Children’s 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

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

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

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:

  1. To obtain a representative cross-sectional view of patients with frailty and their management in Blacktown Hospital Geriatric Medicine Service.
  2. To establish a clinical profile of patients admitted to Blacktown Hospital Geriatric Medicine Service over a five year period (2020-2025).
  3. 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

Marie Pase, Monash University, marie.pase@monash.edu and 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-109 Hepatitis C Liver Disease Nil An Observational Prospective Epidemiological Registry in Australia of Hepatitis C Virus Liver Disease OPERA-C

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

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-139 Coronary Angiography (diagnostic)
Coronary angioplasty/stenting - percutaenous coronary intervention (interventional)
Ischemic heart disease Coronary Angiogram Database of South Australia CADOSA

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-150 Breast, colorectal, lung, prostate and ovarian cancer High burden cancer Continuous Improvement in Care - Cancer Project CIC Cancer

Christobel Saunders, University of Western Australia, christobel.saunders@uwa.edu.au

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

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

Jacinta Opie and Fanny Sampurno, 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

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-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

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

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), Stroke Society of Australasia, Stroke Foundation and George Institute for Global Health. 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

  • Calvary Health Care
  • Canberra Health Service

New South Wales 

  • Bathurst Base Hospital
  • Blacktown Hospital
  • Dubbo Base Hospital
  • John Hunter Hospital
  • Lismore Base Hospital
  • Nepean Hospital
  • Orange Health Service
  • Port Macquarie Hospital
  • Prince of Wales Hospital
  • Royal North Shore Hospital
  • St George Hospital
  • St Vincent’s Hospital 
  • Wagga Wagga Base Hospital
  • Westmead Hospital
  • Wollongong Hospital

Queensland

  • Bundaberg Hospital
  • Caboolture Hospital
  • Cairns Hospital
  • Gold Coast University Hospital
  • Gympie 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
  • Redcliffe Hospital
  • Redland Hospital
  • Robina Hospital
  • Rockhampton Hospital
  • Royal Brisbane and Women’s Hospital
  • Sunshine Coast University Hospital
  • Toowoomba Hospital
  • Townsville Hospital
  • Wesley Hospital

South Australia

  • Flinders Medical Centre
  • Lyell McEwin Hospital
  • 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
  • Ballarat Health Services
  • Bass Coast Health
  • Bendigo Health
  • Box Hill Hospital
  • Central Gippsland Health Service
  • Echuca Regional Health
  • Goulburn Valley Health
  • Hamilton Base Hospital
  • Latrobe Regional Hospital
  • Maroondah Hospital
  • Mildura Base Hospital
  • Monash Medical Centre
  • Northeast Health Wangaratta
  • Peninsula Health – Frankston Hospital
  • Royal Children’s Hospital
  • Royal Melbourne Hospital
  • St Vincent’s Hospital Victoria
  • Swan Hill District Health
  • The Northern Hospital
  • University Hospital Geelong
  • Warrambool Base Hospital
  • West Gippsland Hospital
  • Wimmera Base Hospital
ACSQHC-ARCR-181 Cancer High Burden Cancer South Australian Clinical Cancer Registry SACCR

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

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

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

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

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

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:

  1. Collect patient-reported outcomes after anaesthesia for day surgery
  2. Alert anaesthetists and nurses to post-discharge adverse events after anaesthesia for day surgery
  3. 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-220 Clinical ophthalmology Nil Save Sight Registries SSR

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

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

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-246 Hip fracture Musculoskeletal disorders Australian and New Zealand Hip Fracture Registry ANZHFR

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

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

Kasey Wallis, Monash University, adnet.registry@monash.edu

2020

The Australian Dementia Network (ADNeT) Registry is a Clinical Quality Registry (CQR) 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 registry is operated as part of the wider ADNeT initiative, an NHMRC-funded and philanthropic donor supported initiative, and is being established via a pilot stage whereby methodologies for implementation will be developed and tested at several pilot sites. Learnings from the pilot will inform the national roll-out of the ADNeT Registry. The ADNeT registry will be developed and implemented to comply with the national operating principles for CQRs and governed by the ADNeT Registry Steering Committee.

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 later 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 later 2020 and data collection commenced in early 2021.

New South Wales

  • Brodaty Clinic, Prince of Wales Hospital
  • Brellah Medical
  • Cognitive Disorders Clinic, Prince of Wales Hospital
  • Hornsby Ku-ring-gai Memory Clinic, Hornsby Ku-ring-gai Hospital
  • Memory Assessment Program, Pottsville
  • Murrumbidgee Local Health District Aged Care Outpatient Clinic
  • Neuropsychiatry Clinic, Prince of Wales Hospital
  • Older People’s Mental Health Service, St Vincent’s Hospital
  • Rehabilitation and Aged Care (RACS) Outpatient Clinic, Mona Vale Hospital
  • Salus Clinic
  • Shoalhaven Aged Care Service, Milton Hospital
  • Shoalhaven Aged Care Service, Shoalhaven Hospital
  • Procognition Clinic, Central Coast Neurosciences 

Queensland

  • Agenda Health
  • Cairns Memory Clinic, Cairns Hospital
  • Dementia Assessment Service, Kirwan Health
  • Innisfail Memory Clinic, Innisfail Hospital
  • Mareeba Memory Clinic, Mareeba Hospital
  • Memory Clinic Princess Alexandra Hospital, Princess Alexandra Hospital
  • Neurosciences Queensland
  • Redcliffe Hospital Memory Clinic, Redcliffe Hospital
  • Robert Adam Neurology
  • The Prince Charles Hospital Memory Clinic, The Prince Charles Hospital

South Australia

  • Flinders Medical Centre Memory and Aged Care Clinics, Flinders Medical Centre
  • Royal Adelaide Hospital Memory Service, Royal Adelaide Hospital
  • The Queen Elizabeth Hospital Memory Service, The Queen Elizabeth Hospital
  • Sensus Cognition
  • Specialist Ambulatory Rehabilitation Centre (SpARC) Memory Clinic, Modbury Hospital

Tasmania

  • Calvary Healthcare Sessional Rooms, St Luke’s Campus, Calvary Healthcare 
  • David Dunbabin Aged Care
  • The ISLAND Clinic

Victoria

  • Austin Cognitive Dementia and Memory Service, Austin Health
  • Barwon Cognitive Dementia and Memory Service, McKellar Centre
  • Caulfield Cognitive Decline and Memory Service, Caulfield Hospital
  • Grampians Cognitive Dementia and Memory Service, Ballarat Health Service 
  • Irene Wagner’s Clinic 
  • Royal Melbourne Hospital Neuropschiatry Clinic, Royal Melbourne Hospital
  • Western Health Cognitive Dementia and Memory Service, Footscray Hospital
ACSQHC-ARCR-254 Pancreatic Cancer Nil Upper Gastrointestinal Cancer Registry (UGICR) – Pancreatic Module UGICR – Pancreatic Module

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-262 Prostate cancer High burden cancers NSW Prostate Clinical Cancer Registry PCCR

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

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

Victoria

  • Monash Medical Centre
  • Royal Melbourne Hospital

New South Wales

  • Royal Prince Alfred Hospital
  • Prince of Wales Hospital
  • The Children's Hospital at Westmead
  • Royal Children's Hospital

South Australia

  • Royal Adelaide Hospital
  • Women's and Children's Hospital

Queensland

  • Queensland Children's Hospital

Western Australia

  • Perth Children's Hospital
ACSQHC-ARCR-268 Burn Injuries Burns NSW Statewide Burn Injury Service Registry SBIS registry

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

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:

  1. Benchmarking outcomes to stimulate improvement in patient care
  2. Identifying areas of excellence as well as opportunities for improvement across the entire system of care
  3. Providing an impetus for maximising performance
  4. Applying relevant, emerging best practice principles and share knowledge
  5. Accounting for individual and cohort-related risk factors when assessing outcomes
  6. Providing insight into the medium and long-term safety of cardiac devices, treatments and procedures
  7. 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-284 Biliary System Cancer Nil Upper Gastrointestinal Cancer Registry – Biliary Module UGICR – Biliary Module

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-288 Diabetes Diabetes Australian National Diabetes Audit Longitudinal Register ANDA-L

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

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

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
  • Icon Cancer Centre

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
  • Wollongong Hospital

Northern Territory

  • Royal Darwin Hospital

Queensland

  • Princess Alexandra Hospital
  • Royal Brisbane Hospital
  • Rockhampton Hospital
  • Toowoomba Hospital
  • Townsville Hospital
  • The Tweed 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
  • Waikato Hospital
  • Wellington Hospital
ACSQHC-ARCR-292 Cystic Fibrosis Nil The Australian Cystic Fibrosis Data Registry ACFDR

Professor Susannah Ahern, Academic Lead, Monash University,susannah.ahern@monash.edu
Phoebe Kent, 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
  • Queensland Children Hospital
  • The Prince Charles Hospital

New South Wales

  • Gosford Hospital
  • John Hunter Children's Hospital
  • John Hunter Hospital – Adults
  • Mater 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

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

https://www.anzics.com.au/annual-reports/

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-307 Lymphoma and related diseases High burden cancers Lymphoma and related Diseases Registry LaRDR

Transfusion Research Unit, Monash University, sphpm.transfusion@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

Victoria

  • The Alfred
  • The Austin
  • Ballarat Hospital
  • Box Hill Hospital
  • Epworth Hospital
  • Geelong Hospital
  • Monash Health
  • Peter MacCallum Cancer Centre

Australian Capital Territory 

  • Canberra Hospital

New South Wales

  • Concord Hospital
  • Gosford Hospital
  • St Vincent’s Hospital Sydney

Western Australia

  • Fiona Stanley Hospital
  • Sir Charles Gairnder Hospital

Queensland

  • Gold Coast University Hospital
  • Princess Alexandra Hospital
  • Sunshine Hospital
  • Sunshine Coast University Hospital
  • Toowoomba Hospital

South Australia

  • Royal Adelaide Hospital

Tasmania

  • Royal Hobart Hospital
ACSQHC-ARCR-310 Prostate Cancer High burden cancers Prostate Cancer Outcomes Registry - Northern Territory PCOR-NT

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

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

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-322 Breast device surgery Nil The Australian Breast Device Registry ABDR

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

Meredith (Mimi) Morgan, Monash University, Mimi.morgan@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

Melanie Evans, 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

Helen Thomas, Prevention and Population Health Directorate Wellbeing SA, Helen.Thomas2@sa.gov.au
Associate Professor Daniel Ellis, Director of Trauma, Royal Adelaide Hospital, Co-Chair, Statewide South Australian Trauma Service (SATS), dan.ellis@sa.gov.au
Nicole Kelly, NALHN Trauma Coordinator Advanced Nurse Consultant, Co-Chair SA State Trauma Committee, 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

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
  • 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 Bone Marrow Transplant and cell therapy High burden cancers Australasian Bone Marrow Transplant Recipient Registry ABMTRR

Leonie Wilcox, St Vincent's Hospital Sydney,leonie.wilcox@svha.org.au

1992

The purpose of the ABMTRR 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.
Bone Marrow Transplantation Society of Australia and New Zealand (professional)/ St Vincent's Hospital Sydney (operational) St Vincent’s Hospital HREC: LNR/14/SVH/41
  • 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

http://www.abmtrr.org/index.php/centres/

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

Kelly Tapley/Michaela O’Regan, 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:

  1. Use a collaborative, federated model for effective engagement, participation and support from stakeholders
  2. Provide a platform to receive State and Territory data and measure performance as determined by agreed quality indicators
  3. Transparently report on clinical, procedural and patient outcomes to clinicians, hospitals, government and community
  4. 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:

  1. Time from diagnostic electrocardiogram to PCI mediated reperfusion
  2. Time from door to PCI mediated reperfusion
  3. Peri-PCI stroke
  4. In hospital major bleeding
  5. In hospital mortality
  6. 30-day unplanned cardiac readmission rate after PCI
  7. Unplanned revascularisation within 30 days
  8. 30-day mortality after PCI
  9. Patients without contraindication discharged on lipid-lowering therapy
  10. Patients referred to cardiac rehabilitation or other secondary prevention program
  11. 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

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-362 Clinical cardiology and cardiac services Ischemic heart disease Queensland Cardiac Outcomes Registry QCOR

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

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

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:

  1. Describe the presentation and clinical course of coronavirus infection in pregnant women
  2. Assess obstetric, perinatal and neonatal outcomes after coronavirus infection
  3. Describe modes of transmission, including any cases of mother-to-child transmission
  4. 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
  5. 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

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-392 Paediatric cardiac catheter patients Nil The Cardiac Catheter Outcomes Registry of Australia and New Zealand CCORANZ

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

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:

  1. Monitor orthopaedic injury management, treatment, approaches and outcomes
  2. Identify variations in orthopaedic clinical practice
  3. Identify specific injuries, procedures and patient populations at risk of poor outcomes
  4. 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 Aplastic Anaemia Nil Aplastic Anaemia Registry AAR

Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu

2012

The Aplastic Anaemia Registry was established in 2012, through a collaboration between the Transfusion Research Unit in Monash University’s Department 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 Registry is a clinical quality registry collecting health information on patients diagnosed with aplastic anaemia. Data collection is performed at baseline following diagnosis at 6-months and then annually and collects information on the following:

  • Patient demographics, co-morbidities, and performance status
  • disease characteristics (disease type, severity and laboratory diagnostic data)
  • treatments (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 over 40 Australian hospitals participating in the registry with over 160 participants registered since the first patient data were entered in 2013. The registry is also being used as the data capture platform for the DIAAMOND clinical trial.

Monash University Monash University HREC: CF12/0423 - 2012000185
  • Reported in Annual Report 

Nil

Nil

  • Alfred Hospital
  • Austin Hospital
  • Box Hill Hospital
  • Brisbane Hospital
  • Calvary Mater Hospital Newcastle
  • Canberra Hospital
  • Children's Hospital at Westmead
  • Concord Hospital
  • Fiona Stanley Hospital
  • Flinders Medical Centre
  • Freemantle Hospital
  • Geelong Hospital
  • Gold Coast Hospital
  • Gosford Hospital
  • Greenslopes Private Hospital
  • Hamilton Hospital NZ
  • ICON
  • John Hunter Children's Hospital
  • John Hunter Hospital
  • Launceston Hospital
  • Liverpool Hospital
  • Nepean Hospital
  • Northern Hospital
  • Perth Children's Hospital
  • Prince of Wales Hospital
  • Princess Alexandra Hospital
  • Queen Elizabeth Hospital
  • Queensland Children's Hospital
  • Royal Adelaide Hospital
  • Royal Brisbane and Women's Hospital
  • Royal Children's Hospital Melbourne
  • Royal Hobart Hospital
  • Royal Melbourne Hospital
  • Royal North Shore Hospital
  • Royal Perth Hospital
  • Royal Prince Alfred Hospital
  • Sir Charles Gairdner Hospital
  • St George Hospital
  • St Vincent's Hospital Melbourne
  • St Vincent's Hospital Sydney
  • Townsville Hospital
  • Western Health
  • Westmead Hospital
  • Wollongong Hospital
  • Women's and Children's Hospital
ACSQHC-ARCR-398 Prostate Cancer High burden cancers Prostate Cancer Outcomes Registry - Queensland PCOR-QLD

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-406 Cardio thoracic surgery Ischemic heart disease Australian and New Zealand Society of Cardiac and Thoracic Surgeons Database Program ANZSCTS 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

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
  • Womens And Childrens 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

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
  • Sunshine Hospital
  • The Townsville Hospital

South Australia

  • Flinders Medical Centre
  • Lyell McEwin Hospital

Tasmania

  • Royal Hobart Hospital

Victoria

  • Mercy Hospital For Women
  • Monash Medical Centre - Clayton Campus
  • Royal Children's Hospital
  • Royal Women's Hospital
  • The Northern Hospital

Western Australia

  • King Edward Memorial Hospital
  • Perth Children’s Hospital
  • Royal Darwin 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

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

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

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-438 Multiple myeloma and related diseases High burden cancers Myeloma and related Diseases Registry MRDR

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

Prof Karen Smith, Ambulance Victoria, Karen.Smith@ambulance.vic.gov.au

1999

The VACAR is a clinical quality registry (CQR), incorporating both pre-hospital clinical and operational data and hospital follow-up data from all out-of-hospital cardiac arrest (OHCA) events in Victoria where Ambulance Victoria (AV) paramedics are in attendance. It is used extensively to improve OHCA care. Data is collected from Communication Centre dispatch records, Emergency Medical Services (EMS) patient care records, hospital medical records and from a 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 has also recently been approved to collect data from the National Coronial Information System (NCIS). Data for all OHCA patients attended by AV has been captured for over 110,000 patients. 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, event survival and survival to hospital discharge.

VACAR also provides a robust framework for the measurement and research of immediate, early and long-term clinical outcomes following OHCA in Victoria. VACAR data can be used to conduct epidemiological research studies, the results of which can inform the clinical practice of AV paramedics (clinical quality improvement). VACAR data has informed clinical practice guidelines changes and to prioritise initiatives. The registry is also used to support clinical trials and to evaluate the effectiveness of interventions.

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 Health
  • Albury Wodonga Health - Wodonga Campus
  • Alexandra District Hospital
  • Alpine Health
  • Alpine Health (Bright)
  • Alpine Health (Mount Beauty)
  • Alpine Health (Myrtleford)
  • Angliss Hospital
  • Austin Health - Austin Hospital
  • Austin Health - Heidelberg Repatriation Hospital
  • Bairnsdale Regional Health Service
  • Ballarat Health Services (Base Hospital)
  • Barwon Health
  • Barwon Health - Geelong Hospital Campus
  • Barwon Health North
  • Beaufort & Skipton Health Service
  • Beaufort & Skipton Health Services - Beaufort Campus
  • Beaufort & Skipton Health Services - Skipton Campus
  • Benalla Health
  • Bendigo Health - Bendigo Hospital
  • Bendigo Health Care Group
  • Box Hill Hospital
  • Cabrini Brighton
  • Cabrini Malvern
  • Casey Hospital
  • Casterton Memorial Hospital
  • Caulfield Hospital
  • Central Gippsland Health Service (Sale)
  • Central Highlands Rural Health - Kyneton
  • Cobram District Health
  • Cohuna District Hospital
  • Colac Area Health
  • Dandenong Hospital
  • Djerriwarrh Health Service
  • Djerriwarrh Health Service - Bacchus Marsh
  • Djerriwarrh Health Services - Melton Health
  • East Grampians Health Service
  • East Grampians Health Service - Ararat
  • East Grampians Health Service - Willaura Campus
  • East Wimmera Health Service
  • 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
  • Echuca Regional Health
  • Edenhope and District Memorial Hospital
  • Epworth Eastern Hospital (1 Of 3 Campuses)
  • Epworth Eastern Hospital (2 Of 3 Campuses)
  • Epworth Eastern Hospital (3 Of 3 Campuses)
  • Epworth Freemasons
  • Epworth Rehabilitation Brighton
  • Epworth Richmond
  • Euroa Health
  • Frankston Hospital
  • Gippsland Southern Health Service
  • Gippsland Southern Health Service - Korumburra Campus
  • Gippsland Southern Health Service - Leongatha Campus
  • Goulburn Valley Health
  • Goulburn Valley Health - Shepparton Campus
  • Goulburn Valley Health - Tatura Campus
  • Great Ocean Road Health - Lorne Community Hospital
  • Great Ocean Road Health - Otway Health
  • Hepburn Health Service
  • Inglewood and District Health Service
  • Jessie Mcpherson Private Hospital
  • John Fawkner Private Hospital
  • Kerang District Health
  • Kingston Centre
  • Knox Private Hospital
  • Kooweerup Regional Health Service
  • Kyabram & District Health Services
  • Latrobe Regional Hospital
  • Mansfield District Hospital
  • Maroondah Hospital
  • Maryborough District Health Service
  • Maryborough District Health Service (Dunolly)
  • Maryborough District Health Service (Maryborough)
  • Melbourne Health
  • Melbourne Private Hospital
  • Mildura Base Public Hospital
  • Monash Medical Centre - Clayton Campus
  • Monash Medical Centre - Moorabbin Campus
  • Mulgrave Private Hospital
  • Northern Health
  • Numurkah District Health Service
  • Omeo District Health
  • Orbost Regional Health
  • Peninsula Health
  • Portland District Health
  • Robinvale District Health Services - Manangatang Campus
  • Robinvale District Health Services - Robinvale Campus
  • Rochester and Elmore District Health Service
  • Rosebud Hospital
  • Royal Children's Hospital - Travancore Campus
  • Royal Melbourne Hospital - City Campus
  • Royal Melbourne Hospital - Royal Park Campus
  • Rural Northwest Health
  • Sandringham Hospital
  • Seymour Health
  • South Gippsland Hospital
  • South West Healthcare
  • South West Healthcare - Camperdown
  • South West Healthcare - Warrnambool Campus
  • St John Of God Ballarat Hospital
  • St John Of God Bendigo Hospital
  • St Vincent's Hospital (Melbourne) Ltd
  • 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]
  • Swan Hill District Health [Swan Hill]
  • Swan Hill District Hospital
  • Terang & Mortlake Health Service
  • The Alfred
  • The Bays Hospital (1 Of 2 Campuses)
  • The Bays Hospital (2 Of 2 Campuses)
  • The Kilmore And District Hospital
  • The Northern Hospital
  • The Royal Children's Hospital
  • Timboon & District Healthcare Service
  • Upper Murray Health and Community Services
  • Warringal Private Hospital
  • West Gippsland Healthcare Group
  • West Wimmera Health Service
  • West Wimmera Health Service - Nhill
  • Western District Health Service
  • Western District Health Service - Hamilton
  • Western District Health Service - Penshurst
  • Western Health
  • Western Hospital
  • Western Private Hospital
  • Williamstown Hospital
  • Wimmera Health Care Group
  • Wimmera Health Care Group - Dimboola
  • Wimmera Health Care Group - Horsham
  • Yarram & District Health Service
  • Yarrawonga Health
  • Yea & District Memorial Hospital
ACSQHC-ARCR-441 Head and Neck Cancer High burden cancers Australian Comprehensive Cancer Outcomes and Research Database  Head and Neck Tumour Database ACCORD Head and Neck Tumour

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-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

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

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

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

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 Binational Colorectal Cancer Audit BCCA

Hayat Dagher, Colorectal Surgical Society of Australia and New Zealand, bcca@cssanz.orgcontact@bowelcanceraudit.com

2007

The Binational Colorectal Cancer Audit (BCCA) 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 BCCA is governed by a collaboration of invested parties (CSSANZ, RACS, NZAGS, GSA, and consumers) and contains over 43,000 treatment episodes.

BCCA 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 BCCA 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.

BCCA 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-467 Diabetes Diabetes Australasian Diabetes Data Network ADDN

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

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

Ashley Fletcher, Project Manager, ashley.fletcher@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

Mandy Byrne, Austin Health, mandy.byrne@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

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 High burden cancers The National Gynae-Oncology Registry NGOR

Natalie Heriot, Monash University, natalie.heriot@Monash.edu

2017

The NGOR is a multi-module clinician-led clinical quality registry managed within the Monash University Department of Epidemiology and Preventive Medicine. The registry collects data on women with newly diagnosed cancers of the ovary/ovaries, fallopian tube(s), peritoneum, vulva, vagina, cervix and endometrium which it uses to monitor and report back to sites and clinicians on performance against measures of agreed 'best practice' called quality indicators.

Upon registry maturity, the NGOR is expected to contribute to improved patient outcomes through the identification of variation in care and investigation into whether this variation is warranted or not. The ovarian cancer module (which covers ovarian, tubal and peritoneal cancers) includes a set of carefully chosen quality indicators to reflect current best practice guidelines and Australian standards, developed in consultation with gynaecologic oncologists and other specialists.

The registry is in the process of developing quality indicators for additional registry modules covering cancers of the endometrium, cervix, vulva and vagina.

The NGOR is endorsed by the Australian Society of Gynaecologic Oncologists (ASGO), >20 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 and Tasmania with sites in Western Australia to be added 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
  • Feedback to contributing clinicians
  • Shared with clinicians
  • Shared with hospital executive
  • Reported in Annual Report

Planned for 2020

To be determined

Victoria

  • Monash Health
  • Royal Women's Hospital
  • Epworth Healthcare
  • Mercy Hospital for Women
  • Cabrini Health
  • Warringal Private Hospital
  • Peter MacCallum Cancer Centre
  • Frances Perry House 
  • Werribee Mercy Hospital
  • St Vincent's Hospital Melbourne

New South Wales

  • Westmead Hospital
  • Westmead Private Hospital
  • St George Hospital
  • St George Private Hospital
  • Prince of Wales Private Hospital
  • Chris O'Brien LifeHouse
  • John Hunter Hospital

Western Australia  

  • St John of God Subiaco Hospital 
  • King Edward Memorial Hospital 

Tasmania

  • Royal Hobart Hospital
  • Hobart Private Hospital
ACSQHC-ARCR-485 Cardiac Surgery Ischeamic heart disease International CardioCel Outcome Registry ICOR

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 Nil Australasian Pelvic Floor Procedure Registry APFPR

Joanne Dean, Monash University, apfpr@monash.edu 

2019

The Australasian Pelvic Floor Procedure Registry (APFPR) is a clinician-led national clinical quality registry.  The APFPR commenced operations early in 2021 with the stress urinary incontinence (SUI) mesh procedure module and is recruiting patients from participating hospitals.

The pelvic organ prolapse (POP) mesh procedure module is expected to be rolled out in early 2022. Both clinician and patient reported outcomes are collected by the registry. The registry has been set up to increase the safety of procedures that utilse medical devices such as pelvic mesh and monitor quality of care.

The APFPR will collect data relating to pelvic floor disorder diagnosis, surgery details and intra and post operative complications of implantation, revision and explantation procedures.  Additional data items will be collected for risk adjustment purposes.

Monash University National Mutual Acceptance Scheme Reference 63247 and Monash Health HREC Reference: RES-20-0000-444A

First annual report due in 2022

  • Patient Global Impression of Improvement (PGI-I)
  • 12-Item Short Form Health Survey (SF-12)
  • Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire (PISQ - IR)
  • International Consultation on Incontinence Questionnaire-Female Lower Urinary Tract Symptoms (ICIQ-FLUTS)

Nil

New South Wales

  • St George Hospital Public

South Australia

  • The Queen Elizabeth Hospital
  • Royal Adelaide Hospital

Victoria

  • Bendigo Health
  • Cabrini Health
  • Mercy Hospital 
  • Monash Health
  • St Vincents Private
  • Western Health
ACSQHC-ARCR-496 Joint replacement surgery Musculoskeletal disorders Barwon Joint Registry Nil

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-504 Orthopaedic Joint Replacement Musculoskeletal disorders Australian Orthopaedic Association National Joint Replacement Registry AOANJRR

Cindy Turner, South Australian Health & Medical Research Institute, cturner@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