Prioritised clinical domain
Neonatal critical care
Abbreviation
ANZ CHD Registry
Registry contact

David Celermajer, Royal Prince Albert Hospital - Cardiology, David.celermajer@health.nsw.gov.au

Year established
2021
Description

The ANZ CHD Registry is an initiative designed to transform care for congenital heart disease (CHD) patients in Australia and New Zealand. This registry will become a comprehensive resource by enrolling over 70,000 CHD patients, encompassing all age groups. This data will quantify the lifelong impact of CHD and shed light on disease progression, current management strategies, and factors affecting health outcomes. The registry will further enhance estimates of CHD prevalence within the ANZ population and evaluate the effectiveness of CHD interventions. Ultimately, these insights will directly inform advancements in CHD care, resource allocation, patient education, and research priorities, aligning perfectly with the National Strategic Action Plan for CHD. This data-driven approach has the potential to revolutionize CHD care and significantly improve the lives of countless patients across Australia and New Zealand.

Reporting process
  • Feedback to contributing clinicians
  • Shared with consumers
  • Reported in Annual Report
  • Reported in other public reports
  • Other
  • Academic Publication
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • John Hunter Hospital Royal Newcastle Centre
  • Royal Prince Alfred Hospital
  • The Children's Hospital at Westmead

Queensland

  • Queensland Children's Hospital
  • The Prince Charles Hospital

South Australia

  • The Royal Adelaide Hospital
  • Women's And Children's Hospital, Adelaide

Victoria

  • Royal Melbourne Hospital - City Campus
  • The Royal Children's Hospital, Melbourne

Western Australia

  • Perth Children’s Hospital
  • Sir Charles Gairdner Hospital
Condition
Congenital heart disease
Name
Australia and New Zealand Congenital Heart Disease Registry
Weblink

https://www.chaanz.org.au/anz-congenital-heart-disease-databa

Lead organisation
Congenital Heart Alliance of Australia and New Zealand (CHAANZ)
Ethics approval reference
Ethics Review Committee Royal Prince Alfred Zone of the Sydney Local Health District
Reference: X17-0441 & 2019/ETH07472
Program area
Indicators and measurement
Preferred published date
Immediately

Indicators, measurement and reporting

Measurement and feedback are key to quality improvement. Data can be used to identify areas where services are doing well and areas where improvement is required.

Prioritised clinical domain
Adult critical care
Abbreviation
ANZEDAR
Registry contact

Hatem Alkhouri, NSW Agency for Clinical Innovation, ACI-AirwayRegistry@health.nsw.gov.au

Year established
2013
Description

The Airway Registry includes airway management data from the complete range of rural, regional and metropolitan emergency departments in NSW and more broadly in Australia and New Zealand. Some of the metrics that it includes are patient demographics, indication for intubation, the rate of first pass success and the rate of complications. Objectives: The Airway Registry has two main objectives: Primary Objective: To monitor the safety of emergency airway management across participating sites, including first pass success rates, and the incidence of adverse events. Secondary Objectives: To monitor the process of care involved with emergency airway management across participating sites, focused on potential contributors to adverse events, use safety data to assess variation in practice, benchmark care and evaluate the impact of quality improvement interventions over time and provide baseline data informing the design and conduct of intervention studies. Participating sites receive bench-marking reports allowing them to compare their local performance against similar departments, identifying areas of strength and areas needing improvement.

Reporting process
  • RECap built in reports
  • Power BI Bench-marking Reports
  • Findings published in peer reviewed journal manuscripts
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory

  • Calvary Private Hospital 

New South Wales

  • Albury Wodonga Health
  • Belmont Hospital
  • Blacktown Hospital
  • Bowral Hospital
  • Byron Central Hospital
  • Canterbury Hospital
  • Coffs Harbour Base Hospital
  • Dubbo Base Hospital
  • Hornsby Ku-Ring-Gai Hospital
  • John Hunter Hospital Royal Newcastle Centre
  • Kempsey District Hospital
  • Lismore Base Hospital
  • Liverpool Hospital
  • Macksville District Hospital
  • Manning Rural Referral Hospital (Taree)
  • Mona Vale Hospital
  • Moruya District Hospital
  • Mount Druitt Hospital
  • Murwillumbah District Hospital
  • Nepean Hospital
  • Northern Beaches Hospital
  • Orange Health Service
  • Port Macquarie Base Hospital
  • Prince Of Wales Hospital
  • Queanbeyan District Hospital
  • Royal North Shore Hospital
  • Royal Prince Alfred Hospital
  • St George Hospital
  • St Vincent's Hospital (Darlinghurst)
  • The Maitland Hospital
  • The Sutherland Hospital
  • The Tweed Hospital

Northern Territory

  • Gove District Hospital

Queensland

  • Cairns Base Hospital
  • Caloundra Hospital
  • Gold Coast University Hospital
  • Hervey Bay Hospital
  • Mackay Base Hospital
  • Mater Private Hospital (South Brisbane)
  • Mount Isa Hospital
  • Princess Alexandra Hospital
  • Queen Elizabeth II Jubilee Hospital
  • Queensland Children's Hospital
  • Redcliffe Hospital
  • Rockingham General Hospital
  • Sunshine Hospital
  • Townsville University Hospital
  • Westmead Hospital
  • Wollongong Hospital
  • Wyong Public Hospital

South Australia

  • The Royal Adelaide Hospital

Tasmania

  • North West Regional Hospital
  • Royal Hobart Hospital

Victoria

  • Bendigo Health - Bendigo Hospital
  • Box Hill Hospital
  • Footscray Day Surgery
  • Latrobe Regional Hospital
  • Maryborough Hospital
  • Monash Medical Centre - Moorabbin Campus
  • The Northern Hospital
  • The Royal Childrens Hospital

Western Australia

  • Albany Hospital
  • Broome Hospital
  • Fiona Stanley Hospital
  • Kalgoorlie Health Campus
  • Perth Children’s Hospital
  • Sir Charles Gairdner Hospital
  • St John Of God Midland Public & Private Hospital

New Zealand

  • Auckland City Hospital
  • Christchurch Hospital  
  • Hawke's Bay Hospital
  • Middlemore Hospital
  • Nelson Hospital
  • Tauranga Hospital
  • Waikato Emergency Department
  • Whanganui Hospital 
Condition
Airway management in the emergency department
Name
The Australian and New Zealand emergency department Airway Registry
Weblink

https://aci.health.nsw.gov.au/networks/eci/research/airway-registry

Lead organisation
NSW Agency for Clinical Innovation
Ethics approval reference
Northern Sydney Local Health District Human Research Ethics Committee reference: 1209-318 M
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Nil
Abbreviation
APCOR
Registry contact

Dr Lisa Redwood, University of Wollongong, apcor-coord@uow.edu.au

Year established
2024
Description

The Australian Palliative Care Outcomes Registry (APCOR) holds identified clinical data from individuals who have received palliative care across Australia. This data is submitted by participating hospitals and palliative care services to support research and drive improvements in care quality. Originally established as a longitudinal dataset capturing repeated clinical assessments, APCOR has evolved into a formal clinical quality registry. It contains a curated version of the PCOC quality improvement dataset and includes standardised information on patient demographics, diagnoses, symptom burden, functional status, care settings, and outcomes. In addition to supporting national quality improvement efforts, APCOR provides a governed pathway for the release of data to approved external third parties, enabling ethically responsible research and analysis that advances palliative care knowledge and practice.

Reporting process
  • Feedback to contributing clinicians
  • Shared with other clinicians
  • Shared with hospital executive
  • Reported to State/Territory health departments
  • Reported in Annual Report
  • Reported in other public reports
Patient Reported Outcome Measures (PROMs)

The PROMs are measuring the patient experience of pain, breathing problems, difficulty sleeping, appetite problems, nausea, bowel problems and fatigue. These symptoms are recognised as being the most experienced symptoms for palliative care patients.

Symptom Assessment Score, and once version 4 of the PCOC data set is rolled out in late 2025, it will be the Edmonson Symptom Severity System. 

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australia Capital Territory

  • Canberra Health Services
  • Canberra Hospital – Specialist Palliative Care Consult
  • Clare Holland House

New South Wales

Nepean Blue Mountains Local Health District

  • Nepean Hospital
  • St John of God Health Care: Hawkesbury District Health Service

Northern Sydney Local Health District

  • Royal North Shore Hospital
  • Ryde Hospital
  • Hornsby Hospital
  • Mona Vale Hospital
  • Northern Beaches Hospital
  • Manly Adolescent and Young Adult Hospice

South Eastern Sydney Local Health District

  • Calvary Health Care Kogarah
  • Prince of Wales Hospital

South Western Sydney Local Health District

  • Bowral and District Hospital
  • Camden Hospital (Macarthur Palliative Care Services),
  • Fairfield Hospital Palliative Care Consult
  • Liverpool Hospital

Sydney Local Health District

  • Canterbury Hospital
  • Concord Hospital - Concord Centre for Palliative Care
  • Royal Prince Alfred Hospital (RPA)

Western Sydney Local Health District

  • Auburn Hospital Supportive and Palliative Care Service
  • Blacktown Hospital
  • Mt Druitt Hospital
  • Western Sydney LHD Community Palliative Care
  • Westmead Hospital

Central Coast Local Health District

  • Gosford Hospital
  • Wyong Hospital

Hunter New England Local Health District

  • John Hunter Hospital
  • Maitland Dungog Community Palliative Care Service
  • Manning Rural Referral Hospital
  • Tamworth Base Hospital
  • Tamworth/Nundle Community Health Service

Mid North Coast Local Health District

  • Bellinger River District Hospital
  • Coffs Harbour Community Palliative Care Service
  • Hastings Macleay Community Palliative Care Service
  • Macksville Community Health Centre
  • Wauchope District Memorial Hospital

Western NSW Local Health District

  • Bathurst Health Service
  • Cowra Health Service
  • Dubbo Health Service
  • Lachlan Health Service - Forbes Hospital
  • Lachlan Health Service - Parkes Hospital
  • Mudgee Health Service
  • Orange Health Service

Far West Local Health District

  • Broken Hill Health Service
  • Buronga Specialist Palliative Care Service

Illawarra Shoalhaven Local Health District

  • Bulli Hospital
  • David Berry Hospital
  • Illawarra Shoalhaven Community Specialist Palliative Care Service
  • Shellharbour Hospital
  • Shoalhaven District Memorial Hospital
  • Wollongong Hospital

Murrumbidgee Local Health District

  • Murrumbidgee LHD Palliative Care Service

Southern NSW Local Health District

  • Cooma Hospital

 

  • Arcadia Pittwater Private Hospital
  • Baringa Private Hospital
  • Calvary Health Care Riverina
  • Calvary Mater Newcastle
  • Central Coast Specialist Palliative Care Services
  • Chris O'Brien Lifehouse
  • Forster Private Hospital
  • HammondCare - Braeside Hospital
  • HammondCare - Greenwich Hospital
  • HammondCare - Neringah Hospital
  • HammondCare Community Palliative Care (Incl. Northern Beaches community palliative care),
  • Lourdes Hospital
  • Mater Hospital, North Sydney
  • Mercy Care Centre Young
  • Mercy Health Service Albury
  • Northern Sydney Home Nursing Service
  • Port Kembla Hospital
  • RACF Outreach Community Team
  • Ramsay Health Glengarry Palliative Care Unit/Service
  • RPA Virtual (Sydney District Nursing - Concord, Canterbury, Croydon, Marrickville and Redfern)
  • Silverchain Western Sydney
  • Southern NSW LHD Community Specialist Palliative Care (Goulburn, Eurobodalla, Queanbeyan, Comma & Bega)
  • St Joseph's Hospital
  • St Vincent's Hospital Sydney/ Sacred Heart Palliative Care Service
  • St Vincent's Private Hospital, Lismore
  • Sydney Adventist Hospital
  • Toronto Private Hospital (Aurora Health)
  • Wolper Jewish Hospital
  • Wynnum-Manly PCU

Northern Territory

  • Alice Springs Community Hospice
  • Central Australia Health Service
  • Katherine Hospital
  • Top End Palliative Care Service

Queensland

Cairns and Hinterland Hospital and Health Service (HHS)

  • Cairns & Gordonvale Hospital

Central Queensland Hospital and Health Service (HHS)

  • Rockhampton Base Hospital
  • Gladstone Hospital

Darling Downs Hospital and Health Service (HHS)

  • Toowoomba Hospice
  • Toowoomba Hospital Palliative Care Service

Gold Coast Hospital and Health Service (HHS)

  • Gold Coast Hospital
  • Robina Hospital

Mackay Hospital and Health Service (HHS)

  • Mackay Base Hospital

Metro North Hospital and Health Service (HHS)

  • Royal Brisbane and Women's Hospital
  • Prince Charles Hospital Chermside
  • Caboolture Hospital
  • Redcliffe Hospital Palliative Care Service

Metro South Hospital and Health Service (HHS)

  • QEII Hospital
  • Redland Community Team
  • Metro South Community Palliative Care Service

Sunshine Coast Hospital and Health Service (HHS)

  • Sunshine Coast & Cooloola Palliative Care
  • Caloundra Hospital

Torres and Cape Hospital and Health Service (HHS)

Townsville Hospital and Health Service (HHS)

  • Townsville Hospital
  • Townsville Palliative Care Centre

West Moreton Hospital and Health Service (HHS)

  • Ipswich Hospice
  • Ipswich Hospital
  • Ipswich Nursing Service

Wide Bay Hospital and Health Service (HHS)

  • Bundaberg Palliative Care
  • Hervey Bay & Fraser Coast
  • Maryborough Hospital

 

  • Blue Care
  • Canossa Private Hospital
  • Cittamani Hospice Service
  • Corinda South Brisbane Community Team
  • Fraser Coast Hospice
  • Hopewell Hospice
  • Hospital in Your home
  • Karuna Hospice
  • Katie Rose Cottage Hospice
  • Little Haven Palliative Care Inc
  • Mater Private Brisbane
  • Mater Private Mackay
  • Mt Isa & Surrounds Palliative Care
  • PARAS inpatients Bundaberg Hospital
  • Silverchain Queensland
  • St Vincent's Private Hospital Toowoomba
  • St Vincent’s Hospital Brisbane
  • The Mater Hospital
  • Wesley Private

South Australia

Barossa Hills Fleurieu Local Health Network (LHN)

  • South Coast Palliative Care Service
  • Inner North Palliative Care
  • Adelaide Hills Community Health Service,

Eyre and Far North Local Health Network (LHN)

  • Port Lincoln Palliative Care Service

Flinders and Upper North Local Health Network (LHN)

  • Port Augusta Palliative Care Service
  • Whyalla Palliative Care Service

Limestone Coast Local Health Network (LHN)

  • Limestone Coast LHN Specialist Palliative Care Service

Riverland Mallee Coorong Local Health Network (LHN)

  • Riverland Palliative Care Service

Southern Adelaide Local Health Network (LHN)

  • Southern Adelaide Palliative Services

Yorke and Northern Local Health Network (LHN)

  • Lower North Palliative Care Service
  • Port Pirie Regional Health Service
  • Yorke Peninsula Palliative Care

 

  • Calvary Community Care SA
  • Calvary Health Care Adelaide (Mary Potter Hospice)
  • Central Adelaide Palliative Service
  • Enabling confidence at home community health service
  • Northern Adelaide Palliative Service
  • Royal District Nursing Service - South Australia
  • Stirling District Hospital

Tasmania

  • Calvary Health Care - St Luke's Launceston
  • Calvary Health Care Tasmania - St John's
  • Mersey Community Hospital
  • Palliative Care Service South Tasmania
  • Tasmania Community North
  • Tasmania Community North West

Victoria

  • Anam Cara Geelong
  • Anam Cara House Colac
  • Austin Health Palliative care
  • Bacchus Marsh Community Palliative Care,
  • Ballarat Hospice Care
  • Banksia Palliative Care
  • Barwon Health Palliative care Services
  • Bellarine Community Health
  • Benalla Home Nursing Service
  • Bendigo Health Integrated PCS
  • Cabrini Consult team
  • Cabrini Health
  • Calvary Bethlehem
  • Caritas Christi Kew
  • Colac Area Health - Community Palliative Care
  • East Grampians Health Service
  • Eastern Health Angliss
  • Eastern Health Box Hill
  • Eastern Health Consult Team
  • Eastern Health Maroondah
  • Eastern Health Palliative care Wantirna
  • Eastern Health Palliative Residential Aged Care Consult service (PRACCS)
  • Eastern Palliative Care
  • Echuca Regional Health
  • Fitzroy Hospice
  • Gandarra Palliative Care
  • Goulburn Valley Health
  • Goulburn Valley Hospice Inc.
  • Grampians Community Health Horsham
  • Kyabram District Health Service
  • Latrobe Regional Hospital
  • Logan Community Team
  • Lower Hume Palliative care service Community
  • McCulloch House Supportive and Palliative Care Monash Health
  • Melbourne City Mission Palliative Care
  • Mercy Palliative Care Sunshine
  • Moira Palliative Care Service
  • Murray Mallee
  • Northeast Health Wangaratta Palliative Care
  • Northern Health Broadmeadows - McKenna House Palliative Care
  • Northern Health Palliative Care Consult Team
  • Palliative Aged Care Supportive Service (PACS)
  • Palliative Ambulatory Care Consult Team - Eastern Health
  • Palliative Care South East
  • Peninsula Home Hospice
  • Peter MacCallum Cancer Centre
  • Peter MacCallum Cancer Centre Inpatient Unit
  • Portland District Health - Community Palliative Care
  • Royal Melbourne Hospital (Outlier data)
  • Royal Melbourne Hospital Consult
  • Royal Melbourne Hospital Palliative Care Unit
  • South East Private Hospital
  • South Metropolitan Area Palliative Consultancy
  • South West Healthcare
  • South West Hospital and Health Service
  • St John of God- Berwick Hospital
  • St John of God-Ballarat Hospital
  • St John of God-Bendigo Hospital
  • St John of God-Frankston
  • St John of God Geelong
  • St Vincent's Hospital Fitzroy
  • St Vincent's Hospital Fitzroy Palliative Care Consult
  • Sunraysia Community Health Service
  • Sunshine Hospital Palliative Care Unit
  • Swan Hill Palliative Care Service
  • Tattersalls Peninsula Palliative Care
  • The Alfred Hospital
  • The Northern Hospital
  • Werribee Mercy Hospital (Gabrielle Jenning Centre)
  • Werribee Mercy Hospital PC Consult
  • West Gippsland Community Palliative Care Service
  • Western District Health Service
  • Western Health – Community
  • Wodonga Health Palliative Care Community Service

Western Australia

  • Albany Community Hospice,
  • Bethesda Hospital Palliative Care Unit
  • Bunbury Community
  • Fiona Stanley Hospital Consult Service (including Fremantle Hospital),
  • Geraldton Community (Midwest Regional)
  • Kalamunda Districts Hospital/Armadale Hospital
  • Metropolitan Palliative Care Consultancy Service (MPaCCS)
  • Northam Palliative Care
  • Ramsay Health Joondalup Palliative Care Service
  • Ramsay Health Peel Palliative Care Service
  • Rockingham General Hospital Specialist Palliative Care Consult Service
  • Royal Perth Hospital Specialist Palliative Care Consult Service/inc. Bentley Hospital
  • Silver Chain Community Specialist Palliative Care Service
  • Silver Chain Hospice Care Service WA
  • St John of God - Murdoch Community Hospice
  • St John of God Bunbury
  • St John of God Geraldton
  • St John of God Joondalup
  • St John of God Midland
  • WACHS - Goldfields Regional Palliative Care Service
  • WACHS - Great Southern Regional Palliative Care Service
  • WACHS - Kimberley Regional Palliative Care Service
  • WACHS - Midwest Regional Palliative Care Service
  • WACHS - PalCATS - Palliative Care Telehealth Service
  • WACHS - Pilbara Regional Palliative Care Service
  • WACHS - South West Regional Palliative Care Service
  • WACHS - Wheatbelt Regional Palliative Care Service
Condition
Palliative Care
Name
Australian Palliative Care Outcomes Registry
Weblink

https://www.uow.edu.au/australasian-health-outcomes-consortium/pcoc/research-ethics-and-governance/australian-palliative-care-outcomes-registry/

Lead organisation
University of Wollongong - Palliative Care Outcomes Collaboration (PCOC)
Ethics approval reference
NSW Population & Health Services Research Ethics Committee reference - 2024/ETH02262
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Nil
Abbreviation
DIR
Registry contact

Kellie MacDonald, Dental Impact Registry, Adelaide, kellie@dentalimplantregistry.org.au

Year established
2016
Description

The Dental Implant Registry (DIR) is a comprehensive, web-based registry established to improve the safety, effectiveness, and long-term outcomes of dental implant components and procedures in Australia and New Zealand. The Therapeutic Goods Administration (TGA), has classified dental implants as a Type IIb medical device, indicating a moderate to high risk level. Its primary aim is to collect and analyse data to enhance patient outcomes and improve clinical practice.

The DIR supports research into risk factors, procedural techniques, and patient demographics while fostering collaboration among dental practitioners, manufacturers, and regulatory bodies to minimise complications such as infections, fractures, or loosening of implants. Participants include adults aged 18 and over residing in Australia or New Zealand who consent to provide the required Minimum Data Set (MDS). Governance is overseen by the DIR Steering Committee, comprising dental professionals, industry representatives, and experts in ethical research.

The DIR also has an established Research Committee actively overseeing and supporting research initiatives. By engaging practitioners, researchers, and manufacturers, the DIR aims to educate dental professionals, refine manufacturing processes, and ultimately improve long-term implant success rates. Additionally, it facilitates participant recruitment for research and provides confidential feedback to treating parties, fostering a shared commitment to advancing dental implant care across the region.

Reporting process
  • Via journal article publication
  • Bespoke reports
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Participating sites include private dental clinics, dental specialists in Australia & New Zealand. Please contact the registry for further information about participating sites. 

Condition
Dental Implant treatment outcomes
Name
Dental Implant Registry
Weblink

https://www.dentalimplantregistry.org.au/

Lead organisation
Implant Registries Pty Ltd
Ethics approval reference
Ethics approval received - Bellberry HREC, Application No: 2023-04-385
Program area
Indicators and measurement
Preferred published date
Immediately

PaRIS Survey - Australian National Report 2025

2025
Publication, report or update

The Australian National Report on the OECD Patient-Reported Indicator Surveys (PaRIS) outlines key findings from the first international survey of health outcomes and experiences of patients living with chronic conditions who are treated in GP practices.

This 15-page report summarises data findings across 10 health areas, and outlines key insights for improving the quality of care for people living with chronic conditions.

Released by the Commission on 17 July 2025

-

Managing chronic conditions in Australia - Infographic

2025
Poster or graphic

The OECD Patient-Reported Indicator Surveys (PaRIS) is the first international survey of health outcomes and experiences of patients living with chronic conditions who are treated in GP practices. 

This infographic shows how Australia compares globally, features a data scoreboard of 10 key areas assessed, and provides key data insights on the GP-patient relationship and digital health. 

The Commission is releasing the PaRIS Survey: Australian National Report on 17 July 2025.

-

Australian Register of Clinical Registries

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

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

Prioritised clinical domain
Ischaemic heart disease; Mental Health
Abbreviation
ePBRN
Registry contact

Jitendra Jonnagaddala, University of New South Wales, jitendra.jonnagaddala@unsw.edu.au

Year established
2011
Description

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.

Reporting process
  • 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
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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
Condition
Chronic medical and mental health conditions
Name
Electronic practice based research network
Weblink

https://www.sredhconsortium.org/sredh-datasets/epbrn-2019-gp-hospital-linked-dataset

Lead organisation
Secure Research Environment for Digital Health (SREDH) Consortium
Ethics approval reference
Ethics approval received: HREC/16/LPOOL/83 (NSW Health) ; HC230072 (University of NSW) ; HC230066 (University of NSW)
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Maternity
Abbreviation
Data4ME
Registry contact

Barb Vernon Chief Executive Officer, Women's Healthcare Australasia, barb.vernon@wcha.asn.au

Year established
2018
Description

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.

Reporting process
  • Feedback to contributing clinicians
  • Shared with other clinicians
  • Shared with hospital executives
  • Reported in annual Benchmarking reports
Patient Reported Outcome Measures (PROMs)

Nil. We are committed to collecting and reporting on PROMS once a data source becomes readily available.

Patient Reported Experience Measures (PREMs)

Nil. We are committed to collecting and reporting on PREMS once a data source becomes readily available.

Participating sites

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
Condition
Pregnancy, labour, birth, and immediate newborn outcomes
Name
Data for Maternity Excellence: Australian Maternity Care Clinical Quality Registry
Weblink

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. 

Lead organisation
Women's Hospitals Australasia Inc, trading as Women's Healthcare Australasia
Ethics approval reference
WHA holds signed Data Sharing Agreements with the CEO or their delegate of each participating Health Service. The Agreements stipulate the terms on which de-identified patient level data is shared with WHA and how WHA may store, manage, and use the data for benchmarking, quality improvement and/or research purposes.

WHA has obtained ethics approval for one major study related to this dataset from the HREC at the Royal Brisbane and Women’s Hospital, currently the only NHMRC accredited HREC for Women’s Health research. The approved research project is Project ID: 102817; HREC/2023/MNHB/102817; A quantitative evaluation of the Every Week Counts national program to reduce early and preterm birth in Australia.

Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Nil
Abbreviation
AUS-SCAR
Registry contact

Jason Trubiano, Austin Health, jason.trubiano@austin.org.au

Year established
2019
Description

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.

Reporting process
  • Feedback to contributing clinicians
  • Shared with other clinicians
  • Shared with hospital executive
  • Shared with consumers
  • Shared with medical colleges
  • Reported in other public reports
Patient Reported Outcome Measures (PROMs)

Validated Drug Hypersensitivity Quality of Life

Patient Reported Experience Measures (PREMs)

The Australian Hospital Patient Experience Question Set (AHPEQS)

Participating sites

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
Condition
Severe Cutaneous Adverse Reactions
Name
Australasian Registry for Severe Cutaneous Adverse Reactions
Weblink

https://ausscar.org.au/

Lead organisation
Austin Health
Ethics approval reference
Austin Health Human Research Ethics Committee, Project reference: HREC/50791/Austin-2019
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Adult critical care
Abbreviation
ANZHTR
Registry contact

Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute

Year established
2023
Description

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 process
  • Reporting in development
  • Feedback to contributing clinicians
  • Reported in Annual Report 
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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
Condition
Heart Transplantation
Name
Australia and New Zealand Heart Transplant Registry
Weblink

www.anzdata.org.au

Lead organisation
South Australian Health and Medical Research Institute
Ethics approval reference
Women’s and Children’s Local Health Network HREC reference: 2022_HRE00245
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Adult critical care
Abbreviation
ANZLUNG
Registry contact

Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute

Year established
2023
Description

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 process
  • Reporting in development
  • Feedback to contributing clinicians
  • Reported in Annual Report 
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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
Condition
Lung Transplantation
Name
Australia and New Zealand Lung Transplant Registry
Weblink

www.anzdata.org.au

Lead organisation
South Australian Health and Medical Research Institute
Ethics approval reference
Central Adelaide Local Health Network HREC reference 2023_HRE00270
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Adult critical care
Abbreviation
ANZOD
Registry contact

Kelly Marshall, kelly@anzdata.org.au, South Australian Health and Medical Research Institute

Year established
1989
Description

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.

Reporting process
  • Reported in Annual Report
  • Reported in other public reports
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites
  • DonateLife New South Wales 
  • DonateLife Northern Territory 
  • DonateLife Queensland 
  • DonateLife South Australia 
  • DonateLife Tasmania 
  • DonateLife Victoria 
  • DonateLife Western Australia 
  • Organ Donation New Zealand
Condition
Organ donation
Name
Australia and New Zealand Organ Donation Registry
Weblink

www.anzdata.org.au

Lead organisation
South Australian Health and Medical Research Institute
Ethics approval reference
Mechanism for approval is jurisdictional health information agreements.
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Musculoskeletal disorders; Renal disease
Abbreviation
ANZVASC-QDR
Registry contact

Richard Kitching, richard.kitching@monash.edu, Monash University

Year established
2023
Description

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.
Reporting process

Feedback to contributing clinicians

Patient Reported Outcome Measures (PROMs)
  • AAV-PRO (ANCA-associated vasculitis patient reported outcomes)
  • EQ-5D-5L (EuroQol 5-Dimension 5-level)
  • IPAQ-SF (International Physical Activity Questionnaire - Short Form)
Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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 
Condition
Systemic vasculitis, focused on Anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis and giant cell arteritis
Name
The Australia and New Zealand Vasculitis Quality and Disease Registry
Weblink

Under development 

Lead organisation
Monash University
Ethics approval reference
Monash Health Reference: RES-21-0000-679A
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Musculoskeletal disorders
Abbreviation
ANZFFR
Registry contact

Kirtan Ganda, kirtan.ganda@sydney.edu.au, Concord Repatriation General Hospital

Year established
2022
Description

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 2nd 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
Reporting process
  • Feedback to contributing clinicians
  • Shared with other clinicians
  • Shared with consumers
  • Reported in Annual Report
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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 
Condition
Osteoporosis and fractures
Name
Australian and New Zealand Fragility Fracture Registry
Weblink

www.fragilityfracture.com.au

Lead organisation
Australian Fragility Fracture Foundation
Ethics approval reference
Sydney Local Health District Human Research Ethics Committee - Concord Repatriation General Hospital HREC reference: CH62/6/2022-094.
Program area
Indicators and measurement
Preferred published date
Immediately

Patient experience

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.

Prioritised clinical domain
Nil
Abbreviation
ACGR
Registry contact

Emeritus Professor Keryn Williams, keryn.williams@flinders.edu.au, College of Medicine and Public Health, Flinders University

Year established
1985
Description

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.

Reporting process
  • 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.
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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

Condition
Corneal Transplantation
Name
The Australian Corneal Graft Registry
Weblink

https://www.flinders.edu.au/fhmri-eye-vision/corneal-graft-registry

Lead organisation
Flinders University
Ethics approval reference
Southern Adelaide Clinical Human Research Ethics Committee; HREC Reference: 2021/HRE00176
Program area
Indicators and measurement
Preferred published date
Immediately
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