The Commission has developed the Australian Register of Clinical Registries (the Register) to facilitate collaboration and awareness of registry activity among key stakeholders.
The Register provides summary information on the purpose and organisation of clinical registries at all stages of development. The Register is voluntary and contains a list of clinical registries that have self-nominated to be published on the Register.
Jitendra Jonnagaddala, University of New South Wales, jitendra.jonnagaddala@unsw.edu.au
The UNSW ePBRN is a virtual clinical registry that integrates general practice and hospital data to drive quality improvement in chronic disease and mental health care. Established in 2010 in South West Sydney (SWS), it links routinely collected Electronic Health Record data from 18 general practices (GP) and 5 hospitals in the Fairfield/Wollondilly region.
The purpose of the ePBRN is to collect, link, and analyse real-world primary and hospital care data for a diverse, multi-morbid population, generating evidence to improve care coordination, safety, and outcomes across care settings. The registry monitors longitudinal outcomes and quality indicators, such as hospital admissions and readmissions, emergency presentations, chronic disease management metrics, and care transitions, aligned with national priority areas. The probabilistic linkage of GP and hospital records yields a unified dataset, which is converted to the OMOP common data model, offering a view of continuity of care. Governance is through the Secure Research Environment for Digital Health (SREDH) Consortium’s ePBRN Working Group, with UNSW Sydney, the local Health District, and Primary Health Network as stakeholders.
Robust data quality, privacy, and ethics oversight (UNSW ethics approvals, SREDH governance framework) ensure secure use of de-identified data. The registry provides feedback to participating clinicians and disseminates aggregate findings via consortium reports, publications, and community updates, promoting clinician and public access to insights for service redesign and policy evaluation.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executive
- Shared with consumers
- Shared with medical colleges
- Reported to State/Territory health departments
- Reported in Annual Report
- Reported in other public reports
Nil
Nil
New South Wales
- Bankstown-Lidcombe Hospital
- Bowral Hospital
- Braeside Hospital
- Camden Hospital
- Campbelltown Hospital
- Fairfield Hospital
- Liverpool Hospital
Other
- General practices in south west Sydney
Barb Vernon Chief Executive Officer, Women's Healthcare Australasia, barb.vernon@wcha.asn.au
Data for Maternity Excellence: the Australian Maternity Care Registry aims to support continuous improvement in pregnancy, labour and birth care and outcomes for women and newborns through assisting healthcare services to benchmark their performance with peers, identify trends over time, and identify and respond to unwarranted variation.
The registry is hosted by Women’s Healthcare Australasia (WHA), a not for profit national network of more than 150 maternity care hospitals from all jurisdictions. It currently captures up to 83% of annual public births.
Clinical data on pregnancy, labour and birth care for women giving birth in Australia is collected, analysed and provided back to participating services on more than 70 indicators. Dashboards assist participating services to identify trends in care over time, variation from peer services caring for similar women, and whether improvement efforts are having intended effects.
Annual reports provided to participating hospitals are held in high regard. Services review their report to identify areas of strength in their care of women and newborns, and areas that may warrant further attention and/or improvement.
WHA assists participating services to network with peers demonstrating stronger performance on areas they may wish to strengthen or improve. It also facilitates collaborative quality improvement initiatives, whereby teams from multiple services work together at the same time on improving processes and outcomes of care in relation to a given cohort of women or adverse outcome.
The registry is now offering access to a secure online portal for participating hospitals where data is being updated monthly or quarterly, depending on the capacity of the participating hospitals. A growing suite of analytics is being developed to help clinicians understand how to optimise outcomes for different cohorts of women with shared characteristics or who experience a common adverse outcome. Dashboards also support assessment of performance over time against national clinical care standards such as the Safer Baby Bundle related to stillbirth prevention.
Data in the registry has recently been opened to researchers for analysis and peer reviewed publication.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executives
- Reported in annual Benchmarking reports
Nil. We are committed to collecting and reporting on PROMS once a data source becomes readily available.
Nil. We are committed to collecting and reporting on PREMS once a data source becomes readily available.
Australian Capital Territory
- Centenary Hospital for Women and Children
- North Canberra Hospital
New South Wales
- Armadale Health Service
- Bankstown-Lidcombe Hospital
- Bowral & District Hospital
- Broken Hill Base Hospital
- Campbelltown Hospital
- Cooma District Hospital
- Fairfield Hospital
- Gosford Hospital
- Goulburn District Hospital
- Hornsby Ku-Ring-Gai Hospital
- Liverpool Hospital
- Moruya District Hospital
- Queanbeyan District Hospital
- Royal Hospital For Women
- Royal North Shore Hospital
- St George Hospital
- South East Regional Hospital Bega
- The Sutherland Hospital
- Westmead Hospital
- Wyong Public Hospital
Northern Territory
- Royal Darwin Hospital
Queensland
- Caboolture Hospital
- Chinchilla Hospital
- Dalby Hospital Health Service
- Gold Coast University Hospital
- Goondiwindi Hospital
- Gympie Hospital
- Kingaroy Hospital & Community Health Centre
- Mater Mother's Hospital
- Redlciffe Hospital
- Royal Brisbane & Womens Hospital
- Stanthorpe Hospital
- Sunshine Coast University Hospital
- Toowoomba Hospice
- Townsville Hospital
- Warwick Hospital
South Australia
- Flinders Medical Centre
- Lyell Mcewin Hospital
- Riverland General Hospital
- Women's & Children's Health Network
- Yorke & Northern LHN, SA
Tasmania
- Launceston General Hospital
- Northwest regional hospital
- Royal Hobart Hospital
Victoria
- Angliss Hospital
- Barwon Health - Geelong Hospital Campus
- Bendigo Health - Bendigo Hospital
- Box Hill Hospital
- Castlemaine Health
- Frankston Hospital
- Latrobe Regional Hospital
- Mercy Hospital For Women
- Portland District Health
- Royal Children's Hospital - Travancore Campus
- Royal Women's Hospital
- Swan Hill District Hospital
- Werribee Mercy Hospital
Western Australia
- Academy Day Hospital
- St John of God Midland Hospital
- WA Country Health Service
- Women's & Newborns Health Service WA
Nil. The registry is currently accessed through logging in to the WHA member’s website and then opening the Data4ME portal. So no public website link is currently available.
WHA has obtained ethics approval for one major study related to this dataset from the HREC at the Royal Brisbane and Women’s Hospital, currently the only NHMRC accredited HREC for Women’s Health research. The approved research project is Project ID: 102817; HREC/2023/MNHB/102817; A quantitative evaluation of the Every Week Counts national program to reduce early and preterm birth in Australia.
Jason Trubiano, Austin Health, jason.trubiano@austin.org.au
AUS-SCAR is a prospective registry of clinical data and pair biorepositry samples (optional) in 13 hospital networks across Australia. Patients are prospectively recruited following informed or Medical Decision Maker consent and clinical information, treatment and outcome data is collected. Patient follow up is performed at 3 months and 12 months to ensure appropriate patient follow-up is established and assess long-term care outcomes. A waiver of consent is available to capture cases associated with inpatient early mortality. The data is externally validated to ensure quality and the AUS-SCAR is governed by a multidisciplinary steering committee with established terms of reference. AUS-SCAR is hosted by Austin Health and University of Melbourne and led by Chief Investigator Professor Jason Trubiano. The purpose is to collect data on the burden of SCAR in Australia, the impacts on patient healthcare and patient outcomes and lead to improved diagnosis, prevention, treatment of SCAR with co-development of national guidelines and national care standards.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executive
- Shared with consumers
- Shared with medical colleges
- Reported in other public reports
Validated Drug Hypersensitivity Quality of Life
The Australian Hospital Patient Experience Question Set (AHPEQS)
New South Wales
- Nepean Hospital
- Royal North Shore Hospital
- St George Hospital
- St Vincent's Hospital (Darlinghurst)
Northern Territory
- Royal Darwin Hospital
Queensland
- Royal Brisbane & Women's Hospital
South Australia
- The Royal Adelaide Hospital
Victoria
- Austin Health
- Peter MacCallum Cancer Centre
- Royal Melbourne Hospital - City Campus
- St Vincent's Hospital (Melbourne) Ltd
- The Alfred
- Monash Health
Western Australia
- Fiona Stanley Hospital
Other participating sites
- Doherty Institute
- Murdoch University
- University of Melbourne
These information sheets were developed to support patients and GP practices participating in the Patient-Reported Indicator Surveys (PaRIS Health Survey) in 2023 - an international survey on people living with chronic conditions in primary care, led by the Organisation for Economic Co-operation and Development (OECD).
The Commission implemented the survey in Australia, on behalf of the Australian Government Department of Health and Aged Care.
Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute
The Australia and New Zealand Heart Transplant Registry (ANZHTR) is a newly established registry that will operate as part of the wider group of organ donation and transplantation registries within the Australia and New Zealand Dialysis and Transplant (ANZDATA) registry group. Along with the Australia and New Zealand Lung Transplant Registry (ANZLUNG), these registries serve to fill the void left when the previous Australia and New Zealand Cardiothoracic Organ Transplant Registry ceased operations in 2018. Led by an advisory committee comprising clinical specialists from all heart transplant units across Australia and New Zealand, with collaboration from consumer representatives, this registry aims to become a robust platform for recording and reporting on heart transplantation.
- Reporting in development
- Feedback to contributing clinicians
- Reported in Annual Report
Nil
Nil
New South Wales
- St Vincent's Hospital (Darlinghurst)
Queensland
- The Prince Charles Hospital
Victoria
- The Alfred
- The Royal Childrens Hospital, Melbourne
Western Australia
- Fiona Stanley Hospital
New Zealand
- Auckland City Hospital
Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute
The Australia and New Zealand Lung Transplant Registry (ANZLUNG) is a newly established registry that will operate as part of the wider group of organ donation and transplantation registries within the ANZDATA group. Along with the Australia and New Zealand Heart Transplant Registry (ANZHTR) these registries serve to fill the void left when the previous Australia and New Zealand Cardiothoracic Organ Transplant Registry ceased operations in 2018. Led by a steering committee comprising clinical specialists from all lung transplant units across Australia and New Zealand, with collaboration from consumer representatives, this registry aims to become a robust platform for recording and reporting on lung transplantation.
- Reporting in development
- Feedback to contributing clinicians
- Reported in Annual Report
Nil
Nil
New South Wales
- St Vincent's Hospital (Darlinghurst)
Queensland
- The Prince Charles Hospital
Victoria
- The Alfred
Western Australia
- Fiona Stanley Hospital
New Zealand
- Auckland City Hospital
Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute
The Australia and New Zealand Organ Donation Registry ANZOD collects and reports on all organ, eye and tissue donation, that is used to produce a wide range of statistics for the local, national and international community. Established in 1989, the Registry continues to be a source of information for clinicians, health care educators, researchers, epidemiologists, scientific studies and the general community.
- Reported in Annual Report
- Reported in other public reports
Nil
Nil
- DonateLife New South Wales
- DonateLife Northern Territory
- DonateLife Queensland
- DonateLife South Australia
- DonateLife Tasmania
- DonateLife Victoria
- DonateLife Western Australia
- Organ Donation New Zealand
Richard Kitching, richard.kitching@monash.edu, Monash University
The ANZVASC-QDR has been designed to record all types of systemic vasculitis. Its initial focus will be on anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis, with large vessel vasculitis, including giant cell arteritis to follow. It aligns with the priority clinical domains of musculoskeletal disease and renal disease. The ANZVASC-QDR data set will include relevant demographic and social data, clinical data and investigations at diagnosis and enrolment, as well as routine clinical data from each annual review, as the results of annual routine investigations and other investigations obtained as part of routine care, as well as Patient Reported Outcomes (PRO) and Quality of Life (QOL) data. In some instances, data from other clinical reviews will be recorded. Multisite ethics and National Mutual Acceptance approval for the project has been obtained at Monash Health. A separate approval has been obtained for New Zealand. Monash University is the Data Custodian with input from the Australia and New Zealand Vasculitis Society (ANZVASC). The planned impact of the registry is as follows:
- Provision of clinical quality data to participating units to reduce variation in care for people with vasculitis, and improve care and outcome
- Improve understanding of the quality of life of people with vasculitis and factors affecting these conditions
- Establish a resource to enable research on vasculitis in Australia and New Zealand
- Serve as a platform for registry linked clinical trials and surveillance of new therapies and practices
- Improve training of those involved in the care of people with vasculitis.
Feedback to contributing clinicians
- AAV-PRO (ANCA-associated vasculitis patient reported outcomes)
- EQ-5D-5L (EuroQol 5-Dimension 5-level)
- IPAQ-SF (International Physical Activity Questionnaire - Short Form)
Nil
New South Wales
- The Prince of Wales Hospital
- Westmead Hospital
South Australia
- The Queen Elizabeth Hospital
- Royal Adelaide Hospital
Victoria
- Monash Medical Centre - Clayton Campus
New Zealand
- Auckland Hospital
- Waikato Hospital
Under development
Kirtan Ganda, kirtan.ganda@sydney.edu.au, Concord Repatriation General Hospital
The purpose of the ANZFFR is to use data to improve care and maximise outcomes for older people who have sustained a fragility fracture. Secondary Fracture Prevention programs or Fracture Liaison Services providing identification, assessment and treatment to people with a fragility fracture are eligible to participate in the ANZFFR. People aged 50 years and over who have sustained a fragility fracture are eligible for inclusion in the Registry. The ANZFFR evaluates care of people with fragility fractures against the Clinical Standards for Fracture Liaison Services in NZ (2021) and a set of internationally agreed Key Performance Indicators published in 2024 framed within the “5IQ” structure, encompassing the components of identification, investigation, information, intervention, integration and quality. This is used to identify variation in key aspects of care and clinical outcomes. The Registry feeds the evaluation back to the health system, and the clinicians who work in the system, to inform clinical practice and decision making. The aim of the Registry is to improve the quality and safety of fragility fracture care with the objective of maximising a person’s survival and functional independence after the fracture. The ANZFFR measures and reports against the quality statements and their indicators.1,2
References:
- Osteoporosis New Zealand: Clinical Standards for Fracture Liaison Services in New Zealand 2nd Edition. 2021: https://osteoporosis.org.nz/resources/health-professionals/clinical-standards-for-fls/
- Javaid MK, Sami A, Lems W et al. (2020) A patient-level key performance indicator set to measure the effectiveness of fracture liaison services and guide quality improvement: a position paper of the IOF Capture the Fracture Working Group, National Osteoporosis Foundation and Fragility Fracture Network. Osteoporos Int 31:1193-1204
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with consumers
- Reported in Annual Report
Nil
Nil
New South Wales
- Concord Repatriation Hospital
Victoria
- Western Health
Western Australia
- Sir Charles Gairdner Osborne Park Hospital Group
New Zealand
- Auckland City Hospital
- Christchurch FLS
- Gisborne Hospital
- Hawkes Bay Hospital
- Hutt Hospital
- Middlemore Hospital
- Nelson Hospital
- Northshore Hospital
- Palmerston North Hospital
- Taranaki Base Hospital
- Tauranga Hospital
- Timaru Hospital
- Waikato Hospital
- Wairau Hospital
- Wellsouth Primary Health Network
- West Coast
- Whakatane Hospital
- Whanganui Hospital
- Whangarei Hospital
People receiving care have a unique perspective on the day-to-day running of a health service and how this affects them. Patient experience captures the events and experiences relevant to patients in health care.
Emeritus Professor Keryn Williams, keryn.williams@flinders.edu.au, College of Medicine and Public Health, Flinders University
The ACGR is a clinical registry that follows the outcomes of the surgical procedures of corneal transplantation. A national registry established in May 1985, it currently holds records of over 47,000 surgeries submitted on a voluntary basis by over 1000 ophthalmic surgeons working in both public and private practices. New records accrue at a rate of approximately 2000 per year. Follow-up is requested every 12-18 months until graft failure, loss-to-follow-up or recipient death. Information is collected on the recipient, the corneal donor, practices in the Eye Banks, and details of the surgical procedure. The major outcome measures are graft survival and visual outcomes. Amalgamated, de-identified analyses are provided every two years.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with consumers
- Shared with medical colleges
- Reported in Annual Report
- Reported in other public reports
- Other: A presentation is given each year at the Annual Cornea and Eye Bank meeting and posted on the ACGR website. De-identified, amalgamated reports are posted freely online. Manuscripts are published in the international literature. Individualised reports are provided to individual ophthalmic surgeons annually.
Nil
Nil
A list of contributing surgeons can be found in the freely available major reports, the most recent of which is at: https://doi.org/10.25957/9vyp-0j93 Further information is available from the SAHMRI Registry Centre https://sahmri.org.au/research/programs/registry-centre
Jo Fitzsimons, Orygen, aepcc-cqr@orygen.org.au
The AEPCC CQR (self-reported) aims to improve the quality of early psychosis care by monitoring the quality of early psychosis treatment within Australia. Using data collected in the registry we will identify areas for improvement and investigate the impact of changes in practice on the short-, mid- and long-term outcomes for young people receiving care for early psychosis. The CQR will include participants who are patients of an early psychosis service that have agreed to participate in the AEPCC CQR; and 1) have been identified as early or emerging psychosis either: being at risk of developing a first episode of psychosis or 2) are experiencing a first episode of psychosis (FEP) as determined through relevant clinical assessment. Outcomes include: Duration of untreated psychosis, change in symptoms (BPRS) (including if transitioned to FEP), change in functioning (SOFAS), recovery and quality of life (ReQoL), hospitalisations related to early psychosis diagnosis, medications prescribed, physical health, return to or remaining in education/employment.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executive
- Shared with consumers
- Shared with medical colleges
- Reported to State/Territory health departments
- Reported in Annual Report
Recovering Quality of Life Questionnaire (ReQoL)
Nil
New South Wales
- Program for Early Intervention and Prevention of Disability (PEIPOD) - St Vincent's Hospital
- Early Psychosis Program (EPP) - South Eastern Sydney Local Health District
Northern Territory
- Headspace Early Psychosis - Darwin
South Australia
- Headspace Early Psychosis – Adelaide
Victoria
- Early Psychosis Prevention and Intervention Clinic (EPPIC) - Orygen