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.

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.

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.

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.

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.

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.

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.

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:

1. Osteoporosis New Zealand: Clinical Standards for Fracture Liaison Services in New Zealand 2^nd Edition. 2021: https://osteoporosis.org.nz/resources/health-professionals/clinical-standards-for-fls/
2. 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

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.

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.