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-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 Thrombocytopenia Purpura (TTP)/Thrombotic Microangiopathies (TMA) Registry TTP/TMA Registry

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

2009

The aims of the TTP/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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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-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