Prioritised clinical domain
High burden cancer
Abbreviation
CIC Cancer
Registry contact

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

Year established
2020
Description

The Continuous Improvement in Care – Cancer (CIC Cancer) Project is a multi-institutional program of research that seeks to bring value-based healthcare (VBHC) to public and private healthcare settings in Western Australia (WA).  The project aims to create value through improving outcomes whilst containing costs (www.ciccancer.com). This is achieved through measuring and acting on variations in outcomes that are important for people diagnosed with breast, colorectal, lung, prostate and ovarian cancer.

The results of combined clinical and patient-reported outcome measures will feed back into clinical management processes to improve care; help determine needs for clinical intervention and allow units to assess and improve their practices.

Reporting process
  • Feedback to contributing clinicians - planned
  • Reported to State/Territory health departments - planned
  • Shared with consumers - planned
  • Shared with hospital executive - planned
  • Shared with other clinician - planned
Patient Reported Outcome Measures (PROMs)

Consortium for Health Outcomes Measurement International (ICHOM) data sets and developed dataset for ovarian cancer.

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Western Australia

  • Fiona Stanley Hospital
  • King Edward Memorial Hospital
  • Royal Perth Hospital
  • St John Of God Hospital, Subiaco
  • St John Of God Midland Public & Private Hospital
Condition
Breast, colorectal, lung, prostate and ovarian cancer
Name
Continuous Improvement in Care - Cancer Project
Weblink

www.ciccancer.com

Lead organisation
University of Western Australia
Ethics approval reference
South Metropolitan Health Services HREC RGS 1117 and St John of God Health Care #1422
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
PCOR-ACT
Registry contact

Mirka Smith, Epidemiology Section, Preventive and Population Health, ACT Health Directorate, mirka.smith@act.gov.au

Year established
2016 (includes men diagnosed from 1 July 2015)
Description

The PCOR-ACT is the ACT branch of the PCOR-ANZ research project.  The aim of the PCOR-ANZ is to improve the quality of care provided to men with prostate cancer. All men diagnosed with and/or treated for prostate cancer in the ACT who are eligible to take part in the registry are invited to participate.  Information from the registry will be used to monitor the care provided to men with prostate cancer including type(s) of treatment, related complication(s), and both short- and longer-term outcomes of care. 

This information will be used to help identify whether any gaps exist in the service provision for men with prostate cancer.

Reporting process
  • Reported in Annual Report
  • Shared with hospital executive
  • Shared with other clinicians
Patient Reported Outcome Measures (PROMs)

EPIC-26

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory

  • Barton Private Hospital 
  • Calvary Bruce Public Hospital 
  • Calvary Bruce Private Hospital 
  • Calvary John James Hospital 
  • The Canberra Hospital 
  • Canberra Private Hospital 
  • National Capital Private Hospital 
Condition
Prostate Cancer
Name
Prostate Cancer Outcomes Registry Australian Capital Territory
Weblink

https://prostatecancerregistry.org/

Lead organisation
ACT Health Directorate
Ethics approval reference
ACT HREC ETH. 9.15.178 and Calvary HREC 28-2015
Program area
Indicators and measurement
Prioritised clinical domain
Dementia
Abbreviation
WSCRF
Registry contact

Associate Professor Caleb Ferguson, Western Sydney University & Western Sydney Local Health District, 

ferguson@westernsydney.edu.au

caleb.ferguson@health.nsw.gov.au

Year established
2020
Description

The Western Sydney Clinical Frailty Registry is designed:

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

Secondary objectives:

To obtain a representative cross-sectional study cohort with their socio-economic, medical history, pharmacotherapy, cognitive and frailty assessment data.

Reporting process
  • Reported in other public reports
  • Shared with consumers
  • Shared with hospital executive
  • Shared with other clinicians
  • Dissemination at scientific conferences, peer reviewed publications, local fora, news stories, blogs and social media
Patient Reported Outcome Measures (PROMs)

Frailty and Performance measures (FI-ED, Rockwood Clinical Frailty Scale and the AKPS)

Patient Reported Experience Measures (PREMs)

Frailty and Performance measures (FI-ED, Rockwood Clinical Frailty Scale and the AKPS)

Participating sites

New South Wales

  • Blacktown Hospital
  • Mount Druitt Hospital
Condition
Frailty
Name
Western Sydney Clinical Frailty Registry
Weblink

Nil

Lead organisation
Western Sydney Local Health District
Ethics approval reference
Western Sydney Local Health District HREC 2019/ETH12635
Program area
Indicators and measurement
Prioritised clinical domain
Nil
Abbreviation
ANZCORS
Registry contact

Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au

Year established
2020
Description

A benchmarking registry for outcomes of paediatric cardiac surgery for Australia and New Zealand

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

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • The Children's Hospital - Westmead

Queensland

  • Queensland Children's Hospital

Victoria

  • The Royal Children’s Hospital

Western Australia

  • Perth Children’s Hospital

New Zealand

  • Starship Children's Hospital, Auckland
Condition
Congenital Heart Disease
Name
Australia and New Zealand Congenital Outcomes Registry for Surgery
Weblink

Nil

Lead organisation
Queensland Health
Ethics approval reference
Children’s Health Queensland Hospital and Health Service HREC /2019/QCHQ/49534
Program area
Indicators and measurement
Prioritised clinical domain
Ischeamic heart disease
Abbreviation
ICOR
Registry contact

Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au

Year established
2020
Description

A quality registry of perioperative surgical data from paediatric cardiac units using CardioCel, a tissue substitute used in the repair of cardiac defects.

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

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • The Children’s Hospital at Westmead Children’s, Sydney

Queensland

  • Queensland Children's Hospital, Brisbane

Victoria

  • The Royal Children’s Hospital, Melbourne

Western Australia

  • Perth Children’s Hospital, Perth

International 

  • Starship Children’s Hospital, Auckland
  • Queen Mary Hospital, Hong Kong
  • Insitut Jantung Negara, Kuala Lumpur
Condition
Cardiac Surgery
Name
International CardioCel Outcome Registry
Weblink

Nil

Lead organisation
Queensland Health
Ethics approval reference
Children’s Health Queensland Hospital and Health Service HREC Ref 18/QRCH/87
Program area
Indicators and measurement
Prioritised clinical domain
Trauma
Abbreviation
VOTOR
Registry contact

Melissa Hart, Monash University, Melissa.hart@monash.edu

Year established
2003
Description

The Victorian Orthopaedic Trauma Outcomes Registry was initially funded as a pilot project by the Victorian Trauma Foundation in 2003. It first started as a collaborative project between The Alfred, Royal Melbourne Hospital and the Department of Epidemiology and Preventive Medicine at Monash University. The registry was expanded to include the Geelong Hospital and the Northern Hospital in 2007. It operates as a sentinel site registry and is a comprehensive and robust monitoring system for orthopaedic trauma in Victoria. The overarching aims of the Victorian Orthopaedic Trauma Registry are to:

  1. Monitor orthopaedic injury management, treatment, approaches and outcomes
  2. Identify variations in orthopaedic clinical practice
  3. Identify specific injuries, procedures and patient populations at risk of poor outcomes
  4. Monitor the use of orthopaedic implants and their outcomes
Reporting process
  • Reported in Annual Report 
Patient Reported Outcome Measures (PROMs)
  • Return to work/ study
  • Pain (level, region and side) 
  • World Health Organization Disability Assessment Scale (WHODAS)
  • Global outcome assessment
  • Extended Glasgow Outcome Scale (GOS-E)
  • EuroQOL Group EQ-5D-5L (5 level)
  • EQ_VAS
Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Victoria

  • The Alfred
  • Box Hill Hospital (Eastern Health)
  • Northern Hospital
  • The Royal Melbourne Hospital
  • University Hospital Geelong
Condition
Orthopaedic Trauma
Name
Victorian Orthopaedic Trauma Outcomes Registry
Weblink

https://www.monash.edu/medicine/sphpm/votor/home

Lead organisation
Monash University
Ethics approval reference
Department of Health and Human Services HREC 11-14
Program area
Indicators and measurement
Prioritised clinical domain
Adult critical care
Abbreviation
ANZDATA
Registry contact

Kylie Hurst, ANZDATA Registry, South Australian Health and Medical Research Institute, kylie@anzdata.org.au

Stephen McDonald, ANZDATA Registry, South Australian Health and Medical Research Institute, anzdata@anzdata.org.au

Year established
1977
Description

The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) is a clinical quality registry that collects and produces a wide range of statistics relating to the outcomes of treatment of those with end stage kidney disease (ESKD).  ANZDATA has been in operation since 1977 (but contains data from precursor registries dating back to 1963).  All renal units in Australia and New Zealand contribute data to ANZDATA.

The Registry’s fundamental purpose is to report on the incidence, prevalence and outcomes of dialysis and transplant treatment for patients with ESKD, by providing information that is complete, accurate, clear, relevant, readily available and timely.

Data from the Registry is regularly used to inform clinical practice, monitor quality of clinical care, plan health services, and conduct research projects.

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

Pilot program and registry Clinical Trials underway currently using EQ5D

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

https://www.anzdata.org.au/?s=contributing+unit&data-group=anzdata

Australian Capital Territory

  • Access Nephrology
  • Canberra Hospital

New South Wales

  • Bathurst Base Hospital
  • Coffs Harbour Hospital
  • Concord Hospital
  • Dubbo Base Hospital
  • Gosford Hospital
  • Griffith Base Hospital
  • John Hunter Hospital
  • Lismore Hospital
  • Lismore St Vincent's Private Dialysis Centre
  • Liverpool Private Dialysis Centre
  • Manning Rural Referral Hospital
  • Mater Hospital
  • Mayo Private Hospital - Taree
  • Nepean Hospital
  • Newcastle Nephrocare
  • Northern Beaches Hospital
  • Orange Hospital
  • Port Macquarie Hospital
  • Port Macquarie Private Hospital
  • Prince Of Wales Hospital
  • Royal North Shore Hospital
  • Royal Prince Alfred Hospital
  • South West Sydney Renal Service
  • St George Hospital
  • St Vincent's Hospital Sydney
  • St Vincent's Private Hospital Sydney
  • Sydney Adventist Hospital
  • Sydney Childrens Hospital
  • Tamworth Hospital
  • The Children's Hospital At Westmead
  • The Tweed Hospital
  • Wagga Wagga Base Hospital
  • Westmead Hospital
  • Wollongong Hospital

Northern Territory 

  • Alice Springs Hospital
  • Royal Darwin Hospital

Queensland 

  • Bundaberg Hospital
  • Cairns Hospital
  • Chermside Dialysis Centre
  • Child And Adolescent Renal Service
  • Gold Coast Private Hospital
  • Gold Coast University Hospital
  • Greenslopes Private Hospital
  • Hervey Bay Hospital
  • Ipswich Hospital
  • John Flynn Hospital
  • Mackay Hospital
  • Mater Hospital Brisbane
  • Mater Hospital Townsville
  • Mount Isa Hospital
  • Nambour Selangor Private Hospital
  • Northlakes Private Dialysis Centre
  • Pindara Renal Unit
  • Princess Alexandra Hospital
  • Ramsay Cairns Private Dialysis Centre
  • Rockhampton Hospital
  • Royal Brisbane And Women's Hospital
  • St Andrews Hospital Toowoomba
  • St Andrew's Ipswich - Dialysis Centre
  • Sunshine Coast University Hospital
  • Sunshine Coast University Private Hospital (Ramsay)
  • Toowoomba Hospital
  • Townsville Hospital
  • Wesley Hospital

South Australia

  • Central Northern Adelaide Renal
  • Flinders Medical Centre
  • Women's and Children's Hospital

Tasmania

  • Launceston Hospital
  • Royal Hobart Hospital

Victoria

  • Alfred Hospital
  • Austin Hospital
  • Bendigo Hospital
  • Diamond Valley Dialysis Centre
  • Eastern Health Integrated Renal Services
  • Epworth Eastern Hospital
  • Epworth Geelong Hospital
  • Epworth Richmond Hospital
  • Forest Hill Satellite
  • Geelong Hospital
  • Malvern Dialysis Centre
  • Monash Medical Centre (Adults)
  • Monash Medical Centre (Paediatric)
  • North Melbourne Dialysis Centre
  • Northern Health Service Melbourne
  • Royal Children's Hospital
  • Royal Melbourne Hospital
  • St Vincent's Hospital Melbourne
  • Sunshine Private Hospital
  • Western Health Service

Western Australia

  • Fiona Stanley Hospital
  • Perth Children's Hospital
  • Royal Perth Hospital
  • Sir Charles Gairdner Hospital

New Zealand 

  • Auckland Hospital
  • Christchurch Hospital
  • Dunedin Hospital
  • Hawkes Bay Hospital
  • Middlemore Hospital
  • Palmerston North Hospital
  • Starship Children's Hospital
  • Taranaki Hospital
  • Waikato Hospital
  • Waitemata Renal Service
  • Wellington Hospital
  • Whangarei Hospital
Condition
End Stage Kidney Disease
Name
Australia and New Zealand Dialysis and Transplant Registry
Weblink

www.anzdata.org.au

Lead organisation
South Australian Health and Medical Research Institute
Program area
Indicators and measurement
Prioritised clinical domain
Ischemic heart disease
Abbreviation
Aus-ROC OHCA Epistry
Registry contact

Janet Bray, Monash University, janet.bray@monash.edu

Year established
2015
Description

The Aus-ROC OHCA Epistry aims to monitor and report on the population-based effects of changes in pre-hospital resuscitation policy and practice. Specifically, understanding regional, ambulance service and treatment factors associated with improved OHCA survival and outcomes.

Population: all OHCA cases attended by Australian and New Zealand ambulance services. 

Outcomes: survival to hospital discharge/30 days, event survival and return of spontaneous circulation (ROSC).

Reporting process
  • In development - reporting to contributing ambulance services
  • Quarterly Management Committee Meetings
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory

  • ACT Ambulance Service

New South Wales

  • Ambulance New South Wales

Northern Territory

  • St John Ambulance Northern Territory

Queensland

  • Queensland Ambulance Service

South Australia

  • S.A. Ambulance Service

Tasmania

  • Ambulance Tasmania

Victoria

  • Ambulance Victoria

Western Australia

  • St John Ambulance Western Australia

New Zealand

  • St John Ambulance New Zealand
  • Wellington Free Ambulance
Condition
Out-of-Hospital Cardiac Arrest
Name
Australian Resuscitation Outcomes Consortium (Aus-ROC) Australian and New Zealand Out-of-Hospital Cardiac Arrest Epistry
Weblink

https://www.ausroc.org.au/epistry/

Lead organisation
Monash University
Ethics approval reference
Monash University Human Ethics Committee ref: #13933
Program area
Indicators and measurement
Prioritised clinical domain
Nil
Abbreviation
OPERA-C
Registry contact

Dr Paul Clark, Mater Adult Hospital, Brisbane Queensland Australia, drpjclark@gmail.com

Year established
2015
Description

This is a prospective, multi-centre, observational, national registry of HCV infected patients.

The purpose of the registry is to establish a prospective national registry of patients with HCV liver disease attending ALA CRN liver clinics and hepatitis treatment centres, to better understand the epidemiology, treatment outcomes and health care burden and costs of the HCV pandemic.

The aims include:

  • To describe the epidemiology of HCV infection in a prospective multicentre cohort of HCV infected patients
  • To record baseline demographics, clinical, virologic and liver disease characteristics, and prior treatment status
  • To characterise HCV treatment response and treatment limiting adverse event rates
  • To assess the impact of treatment and virological response on patient outcomes
  • To evaluate health care utilisation costs associated with chronic HCV infection.

The population includes: 

  • Male and females ≥ 18 years of age.
  • Under the care of an ALA CRN liver clinic or hepatitis treatment centre for management of hepatitis C infection.
  • Evidence of current or prior HCV infection based on positive HCV RNA test by PCR.
  • Written informed consent.
Reporting process
  • Feedback to contributing clinicians
  • Reported in Annual Report
  • Shared with Gastroenteroly Society of Australia
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory

  • The Canberra Hospital

New South Wales

  • Bathurst Base Hospital
  • Blacktown Hospital
  • John Hunter Hospital Royal Newcastle Centre
  • Liverpool Hospital
  • Nepean Hospital
  • Orange Health Service
  • Royal Prince Alfred Hospital
  • St George Hospital
  • Westmead Hospital

Queensland

  • Princess Alexandra Hospital
  • Rockhampton Base Hospital
  • Royal Brisbane and Women's Hospital

South Australia

  • Flinders Medical Centre
  • Lyell McEwin Hospital
  • The Royal Adelaide Hospital

Victoria

  • The Alfred
  • Austin Health - Austin Hospital
  • Barwon Health - Geelong Hospital Campus
  • Box Hill Hospital
  • Latrobe Regional Hospital
  • Mater Adult Hospital
  • Monash Medical Centre - Clayton Campus
  • St Vincent's Hospital (Melbourne) Ltd

Western Australia

  • Royal Perth Hospital
  • Sir Charles Gairdner Hospital
Condition
Hepatitis C Liver Disease
Name
An Observational Prospective Epidemiological Registry in Australia of Hepatitis C Virus Liver Disease
Weblink

Nil available

Lead organisation
Gastroenterology Society of Australia Liver Faculty
Ethics approval reference
Royal Brisbane and Women's Hospital HREC/15/QRBW/183
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
PCOR-QLD
Registry contact

Heather Day, Clinical Registry Manager, Queensland University of Technology, pcorqld@qut.edu.au

Year established
2016
Description

PCOR-QLD focuses on describing patterns of care following a diagnosis of prostate cancer, monitoring quality of delivered care and whether it is in line with evidence-based guidelines. Population captured: PCOR-QLD is a population-based registry currently capturing 85 percent of all newly diagnosed cases of prostate cancer in Queensland. Outcomes measured: positive margin rate post prostatectomy, documentation of clinical stage, PSA recorded pre-diagnosis, post prostatectomy and 12 months post treatment, advanced disease and appropriate use of active surveillance, patient-reported quality of life measurements at 12 months post treatment or diagnosis (if no treatment has occurred).

Notifications of prostate cancer are obtained from the Queensland Cancer Register for participating institutions and clinicians. Data is collected from public hospital medical records and private clinician's medical records. Data is collected by using a secure web-based portal. Data is collated and bench-marking reports are sent out every six months to participating institutions and clinicians.

Reporting process
  • Reported in Annual Report
  • Shared with clinicians
  • Shared with hospital executive
Patient Reported Outcome Measures (PROMs)

The Expanded Prostate Cancer Index Composite  (EPIC-26)  Short Form - a Quality of Life questionnaire.

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

https://prostatecancerregistry.org/whos-involved/

Queensland

  • Bayside Urology - Private
  • Bowes Urology
  • Brisbane Private Hospital
  • Brisbane Prostate Clinic
  • Brisbane Urology Clinic
  • Buderim Private Hospital
  • Cairns Hospital
  • Coastal Urology Clinic
  • Dr Kenneth P'ng Private Practice
  • Dr Kenny Rao Urology
  • East Coast Urology
  • Genesis Care
  • Gold Coast Private Hospital
  • Gold Coast University Hospital
  • Gold Coast Urology
  • Greenslopes Private Hospital
  • Greenslopes Urology Clinic
  • Ipswich Hospital
  • Ipswich Urology
  • Jamie Reynolds Urology
  • Jo Schoeman Urology
  • Mackay Base Hospital
  • Mackay Urology
  • Mater Hospital Brisbane
  • Mater Hospital Mackay
  • Mater Private Hospital Townsville
  • Northern Urology
  • Northern Urology Clinic
  • Oceanside Urology
  • Patrick Dunne Urology
  • Pioneer Urology
  • Princess Alexandra Hospital
  • QE II Jubilee Hospital
  • Queensland Prostate Clinic
  • Redcliffe Hospital
  • Rockhampton Hospital
  • Royal Brisbane and Women’s Hospital
  • St Andrew's Hospital Toowoomba
  • St Vincent's Private Hospital Northside
  • Sunshine Coast Urology Clinic
  • The Prostate Clinic (Gold Coast)
  • Toowoomba Base Hospital
  • Toowoomba Urology
  • Townsville Hospital
  • Townsville Urology
  • UroBriz
  • UroMed
  • Watson Urology
  • Wesley Hospital
  • Wesley Urology Clinic
Condition
Prostate Cancer
Name
Prostate Cancer Outcomes Registry - Queensland
Weblink

https://prostatecancerregistry.org/

Lead organisation
Monash University
Ethics approval reference
MetroSouth HREC:HREC/15/QPAH/573
Program area
Indicators and measurement
Prioritised clinical domain
Dementia
Abbreviation
ADNeT Registry
Registry contact

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

Year established
2020
Description

The Australian Dementia Network (ADNeT) Registry is a Clinical Quality Registry (CQR) (self-reported) for people diagnosed with either dementia or mild cognitive impairment (MCI). The aims of the registry are to:

  • Collect and analyse data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or MCI in Australia
  • Facilitate the recruitment of participants into research projects.

Eligible patients are identified and recruited initially from specialist services (e.g. memory clinics) and individual medical specialists (e.g. geriatricians and neurologists) involved in the diagnosis of dementia. Data is collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. 

The ADNeT Registry has been developed and implemented to comply with the national operating principles for CQRs and is governed by the ADNeT Registry Steering Committee.

The ADNeT Registry is part of Australian Dementia Network (ADNeT), a multi-institutional, Australia-wide consortium of dementia researchers and clinicians. The network was initially funded by the Boosting Dementia Research Initiative grant from the National Health and Medical Research Council’s National Institute for Dementia Research and philanthropic organisations. ADNeT received additional funding from the Department of Health and Aged Care for fiscal years 2024 to 2025. From 1 July 2023, the ADNeT Registry is also supported by funding from the Australian Government, Department of Health and Aged Care, under the National Clinical Quality Registry Program. 

Reporting process
  • Reported in Annual Report
  • Reported in other public reports
  • Shared with clinicians
  • Shared with consumers
  • Shared with hospital executive
  • Shared with medical colleges
  • Conference presentations, publication in peer-reviewed journals
Patient Reported Outcome Measures (PROMs)

The ADNeT Registry baseline participant and carer surveys included two patient/carer-reported outcome measure questions. The two questions were developed based on quality of life questions used in earlier studies. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021.

Patient Reported Experience Measures (PREMs)

The ADNeT Registry baseline participant and carer surveys include nine patient/carer-reported experience measure questions. Seven of these questions were developed based on experience questions used in earlier studies, and the remaining two were developed by the ADNeT Registry Survey Working Group. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021.

Participating sites

New South Wales

  • Burwood Specialists 
  • Central Coast Neurosciences (CCN) - Procognition Clinic
  • Dr Margaret Beazley, Geriatrician, practising at Geriatric Specialist Care
  • Dr Mark Hohenberg, Brellah Medical Group
  • Geriatric Medicine Services, Western NSW LHD
  • Hornsby Ku-ring-gai Memory Clinic, Hornsby Ku-ring-gai Hospital
  • Memory Assessment Program, Pottsville 
  • Murrumbidgee Local Health District Aged Care Outpatient Clinic, Wagga Wagga Base Hospital 
  • Northern Beaches Geriatricians
  • Prince of Wales Hospital Brodaty Clinic
  • Prince of Wales Hospital Cognitive Disorders Clinic
  • Prince of Wales Hospital Neuropsychiatry Clinic 
  • Rehabilitation and Aged Care (RACS) Outpatient Clinic, Mona Vale Hospital 
  • Shoalhaven Aged Care Service, Milton Hospital 
  • Shoalhaven Aged Care Service, Shoalhaven Hospital 
  • Southcare Geriatricians, Sutherland Hospital

Northern Territory 

  • Top End Memory Service

Queensland

  • Agenda Health
  • Beach Brain
  • Cairns Memory Clinic, Cairns Hospital 
  • Dementia Assessment Service, Kirwan Health 
  • Dr John Endacott, Geriatrician at Eden Hospital
  • Dr Logan, Geriatrician practising at Lakelands Medical Centre
  • Geriatric, Adult Rehabilitation and Stroke Services (GARSS) Memory Clinic
  • Healthy Ageing Gold Coast
  • Innisfail Memory Clinic, Innisfail Hospital 
  • Ipswich Health Plaza Memory and Geriatric Clinics, Ipswich Hospital
  • LifeSpan Specialists
  • Mareeba Memory Clinic, Mareeba Hospital 
  • Memory Clinic Princess Alexandra Hospital, Princess Alexandra Hospital
  • Memory Clinic Surgical, Treatment and Rehabilitation Services (STARS)
  • Neurosciences Queensland 
  • Princess Alexandra Hospital Geriatric Clinic
  • Redcliffe Hospital Memory Clinic, Redcliffe Hospital 
  • Robert Adam Neurology 
  • Robina Private Hospital - Memory Clinic, Robina Private Hospital
  • The Prince Charles Hospital Memory Clinic, The Prince Charles Hospital 
  • Your Brain in Mind

South Australia

  • Acacia-Fiori Geriatrics
  • Central Adelaide Local Health Network Department of Geriatrics and Rehabilitation Medicine
  • Flinders Medical Centre Memory and Aged Care Clinics 
  • Murray Bridge Soldiers' Memorial Hospital Geriatric Services
  • QE Specialist Centre, Prof R Visvanathan
  • Riverland General Hospital Geriatric Services
  • Royal Adelaide Hospital Memory Service 
  • Sensus Cognition 
  • Specialist Ambulatory Rehabilitation Centre (SpARC) Memory Clinic 
  • The Queen Elizabeth Hospital Memory Service

Tasmania

  • David Dunbabin Aged Care
  • Dr Krishna Kalpurath, Calvary Healthcare Sessional Rooms, Launceston 
  • Hazel Bucher Nurse Practitioner Consultancy 
  • The ISLAND clinic 

Victoria

  • Austin Cognitive Dementia and Memory Service (CDAMS), Heidelberg Repatriation Hospital
  • Barwon Health Cognitive Dementia and Memory Service (CDAMS), McKellar Centre
  • Bass Coast Health Geriatric Medicine Clinic
  • Caulfield Cognitive Decline and Memory Service (CDAMS), Caulfield Hospital 
  • Central Geriatrician Associates
  • Dr Jagadeesh Herur, Glencairn Private Consulting Suites
  • Dr Jagadeesh Herur, Harvester Private Consulting Suites
  • Dr Rebecca Iseli, Geriatrician, practising at North Melbourne Ear, Nose & Throat 
  • Eastern Cognitive Disorders Clinic
  • Eastern Health Cognitive Dementia and Memory Service (CDAMS), Wantirna Health
  • Echuca Regional Health Cognitive, Dementia and Memory Service (CDAMS)
  • Goulburn Valley Health Cognitive Dementia and Memory Service (CDAMS)
  • Grampians Cognitive Dementia & Service Clinic (CDAMS), Ballarat Health Service 
  • Irene Wagner’s Clinic 
  • Kingston Cognitive Dementia and Memory Service (CDAMS), Monash Health
  • Prof Dennis Velakoulis, Church Street Consulting Suites, The Melbourne Clinic
  • Royal Melbourne Hospital Cognitive Dementia and Memory Service (CDAMS), Royal Park
  • Royal Melbourne Hospital Neuropsychiatry Clinic, Royal Melbourne Hospital 
  • Western Health Cognitive Dementia and Memory Service (CDAMS), Footscray Hospital

Western Australia

  • Dr Roger Clarnette, Geriatrician practising at Hollywood Specialist Centre
  • Fremantle Hospital Comprehensive Care Centre
Condition
Dementia, Mild Cognitive Impairment
Name
Australian Dementia Network Registry
Weblink

https://www.australiandementianetwork.org.au/

Lead organisation
Monash University
Ethics approval reference
Alfred Hospital HREC - Project 44037 (Local reference: 424/18)
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Nil
Abbreviation
ANZCA PCORE: Pilot
Registry contact

Dr Jennifer Reilly, Monash University/Alfred Hospital, jennifer.reilly@monash.edu

Year established
2020
Description

The aim of ANZCA PCORE: Pilot is to develop a pilot population-based perioperative clinical quality registry to optimise quality of care provided to individuals undergoing anaesthesia and surgery, in accordance with the Operating Principles of the Framework for Australian Clinical Quality Registries. The target population is adults undergoing inpatient non-cardiac surgery (requiring a hospital stay of at least 1 night postoperatively). Public and private hospitals in each state and territory of Australia are invited to join ANZCA PCORE: Pilot.

ANZCA PCORE: Pilot plans to collect a minimum dataset of perioperative risk factors, process of care data (including critical care admission) and mortality data to provide:

  • Measurement of perioperative risk factors and mortality outcomes
  • Risk adjusted benchmarking of hospital performance
  • Identification of outlying hospitals
  • Mortality risk prediction modelling
  • Population-level epidemiological data to inform clinical trials and cohort studies
  • Facilitation of registry-based cohort studies

The pilot registry will initially be based at Monash University but has ethics approval to be hosted at the Australian Institute of Health and Welfare in Canberra and enabled for data linkage to the ANZICS CORE Registries and the National Death Index.

Reporting process
  • Feedback to contributing clinicians
  • Shared with medical colleges
Patient Reported Outcome Measures (PROMs)

The registry has ethics approval to collect PROMS as per the ICHOM standard sets.

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory 

  • To be advised

New South Wales

  • John Hunter Hospital
  • Gosford Hospital (pending)
  • Prince of Wales Hospital
  • Royal Prince Alfred Hospital
  • Westmead Hospital

Northern Territory

  • Royal Darwin Hospital (pending)

Queensland

  • Metro South Hospital and Health Service (Princess Alexandra Hospital, Queen Elizabeth II Jubilee Hospital, Logan Hospital)
  • Ipswich Hospital

South Australia

  • Flinders Medical Centre
  • Lyell McEwen Hospital

Tasmania

  • To be advised

Victoria

  • Alfred Health
  • Austin Hospital
  • Peter MacCallum Cancer Centre
  • Dandenong Hospital
  • Geelong Hospital
  • Northern Hospital (pending)

Western Australia

  • St John of God Health Care Subiaco
  • Fiona Stanley Hospital

 

Condition
Perioperative Medicine, Anaesthesia and Surgery
Name
Australian & New Zealand College of Anaesthetists Perioperative Clinical Outcomes Registry: Pilot
Weblink

Nil available

Lead organisation
Monash University
Ethics approval reference
Alfred Hospital HREC - Project 60317
Program area
Indicators and measurement
Prioritised clinical domain
Diabetes
Abbreviation
ANDA-L
Registry contact

Sophia Zoungas, School of Public Health and Preventive Medicine, Monash University, sophia.zoungas@monash.edu

Year established
2019
Description

The Australian National Diabetes Audit Longitudinal Register (ANDA–L) is a sub-study of the Australian National Diabetes Audit (ANDA) with its main focus to prospectively follow up the same cohort of patients over a 2 - 4 year period during the ANDA-AQCA (Australian Quality Clinical Audit) data collection. The data collected are clinical indicators known to have impact on the care of people with diabetes.

ANDA-L aims to:

  • Measure and report on longitudinal trends in the characteristics, type of care and major clinical outcomes (including survival) of a cohort of patients with diabetes attending diabetes services nationwide, with all data aggregated at a national level
  • Evaluate longitudinal associations between patient characteristics, quality of care and major clinical outcomes (including survival).

This allows participating centres to observe changes in clinical indicators for people with diabetes at both a group and individual level and offers a rich source of understanding of treatments, and clinical outcomes for people with diabetes. ANDA-L will provide longitudinal descriptive reporting to treating centres for quality management.

Reporting process
  • Shared with clinicians
  • Shared with hospital executive
  • ANDA-L provides longitudinal descriptive reporting to treating participating centres for quality management.
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • Greater Newcastle Sector Diabetes Service
  • Liverpool Hospital
  • Murrumbidgee Local Health District

Queensland

  • Cairns Diabetes Centre
  • Redland Hospital

Victoria

  • Barwon Health - Geelong Hospital Campus
  • Cobram District Health
  • Dandenong Hospital
  • Gateway Health-Wangaratta
  • Gateway Health-Wodonga
  • Goulburn Valley Health - Shepparton Campus
  • Kyabram & District Health Services
  • Monash Medical Centre - Clayton Campus
  • Numurkah District Health Service
  • Royal Melbourne Hospital - City Campus
  • St Vincent's Public Hospital-Melbourne
Condition
Diabetes
Name
Australian National Diabetes Audit Longitudinal Register
Weblink

https://www.monash.edu/medicine/anda/home

Lead organisation
Monash University
Ethics approval reference
Monash Health HREC/48547/MonH-2019
Program area
Indicators and measurement
Prioritised clinical domain
Diabetes
Abbreviation
ANDA
Registry contact

Sophia Zoungas, School of Public Health and Preventive Medicine - Monash University, sophia.zoungas@monash.edu

Year established
2013
Description

The Australian National Diabetes Audit (ANDA) is a well-established, biennial, quality activity facilitated by the National Association of Diabetes Centres, in services providing care for people with diabetes across Australia (all states and territories). Participating diabetes centres including primary, secondary and tertiary care receive an individualised report of their patient data on the clinical status and outcomes of individuals attending services providing diabetes care across the country. The aim of ANDA is for diabetes centres to use this information for quality improvement and benchmarking purposes. ANDA captures patients aged over 18 years with diabetes attending participating centres across Australia. The outcomes collected alternate each year through the following audits:

1. ANDA-AQCA (Australian Quality Clinical Audit) – The focus is on clinical indicators known to impact on the outcomes of the person with diabetes

2. ANDA-AQSMA – (Australian Quality Self-Management) – the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected.

Reporting process
  • Reported in Annual Report
  • Shared with clinicians
  • Shared with consumers
  • Shared with hospital executive
  • Shared with medical colleges
  • Site report available to participating sites for benchmarking purposes.
Patient Reported Outcome Measures (PROMs)

During the ANDA-AQSMA data collection, the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected.

Patient Reported Experience Measures (PREMs)

During the ANDA-AQSMA data collection, the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected.

Participating sites

Australian Capital Territory

  • ACT Health Diabetes Service
  • National Health Cooperative

New South Wales

  • Albury Wodonga Aboriginal Health Service
  • Albury Wodonga Health - Albury Campus
  • Baker Heart and Diabetes Institute
  • Ballina Byron Diabetes Centre
  • Bankstown-Lidcombe Hospital
  • Blacktown Hospital
  • Calvary Mater Newcastle
  • Clarence Diabetes Service
  • Emerald Medical Group
  • Gardens Medical Group
  • GNS Diabetes Service Newcastle
  • Healthfocus Family Practice
  • Illawara Shoalhaven Diabetes Service
  • Lismore & District Diabetes Centre
  • Liverpool Diabetes and Endocrine Service
  • Macarthur Diabetes and Endocrine Service
  • Murrumbidgee Local Health District
  • Mount Druitt Hospital
  • Prince Of Wales Hospital
  • Royal North Shore Hospital
  • Royal Prince Alfred Hospital
  • South West Hospital & Health Service
  • St Vincent’s Diabetes Service - Darlinghurst
  • Toukley Family Practice
  • Westmead Hospital

Northern Territory

  • Alice Springs Hospital
  • Healthy Living NT Alice Springs
  • Healthy Living NT Darwin

Queensland

  • Acacia Ridge National Diabetes Centre
  • Brisbane South Complex Diabetes Service
  • Cairns Diabetes Centre
  • Chronic Disease Diabetes Logan
  • Gold Coast University Hospital
  • Ipswich Diabetes Service
  • Logan & Beaudesert Diabetes Services
  • Princess Alexandra Hospital
  • Queensland Diabetes and Endocrine Centre - Mater Health
  • Redland Hospital
  • Sunshine Coast Diabetes & Endocrinology Service
  • Toowoomba Diabetes Service
  • The Townsville Hospital
  • Tweed Byron Diabetes Service
  • Whitsunday Doctors Service

South Australia

  • GP Plus Noarlunga Intermediate Care - Diabetes Services
  • Lyell Mcewin Hospital
  • Repatriation General Hospital Daw Park
  • The Royal Adelaide Hospital

Tasmania

  • John Morris Diabetes Centre - Launceston General Hospital
  • North West Diabetes Centre
  • Royal Hobart Hospital

Victoria

  • Access Health and Community - Hawthorn & Doncaster sites
  • Alexandra District Health
  • The Alfred
  • Ballarat Health Services - Base Hospital
  • Barwon Health
  • Barwon Health - Community Diabetes Service
  • Barwon Health - Geelong Hospital Campus
  • Beechworth Health Service
  • Benalla Community Health
  • Bendigo Diabetes and Endocrine Centre
  • Bendigo Health - Beechworth Health Service
  • Bendigo Primary Care Centre
  • Cabrini Hospital - Malvern
  • Castlemaine District Community Health Centre
  • Cobram District Health
  • Green Street Specialists
  • Dandenong Hospital
  • Eastern Health
  • Echuca Regional Health
  • Frankston Hospital
  • Gateway health Wangaratta
  • Gateway Health Wodonga
  • Gippsland Southern Health Service - Leongatha Campus
  • Geelong Endocrinology and Diabetes
  • Goulburn Valley Health - Shepparton Campus
  • Kensington Hill Medical Centre
  • Kyabram & District Health Services
  • Monash Health Community
  • Monash Medical Centre - Clayton Campus
  • Mount Gambier Community Health Service - SERCHS
  • Nathalia District Hospital
  • Nexus Primary Health
  • Northeast Health Wangaratta
  • Northern Health
  • Numurkah District Health Service
  • Ovens and King Community Health Service - Wangaratta
  • Royal Melbourne Hospital - City Campus
  • Preston Market Medical Centre
  • Seymour Health
  • St Vincent’s Public Hospital, Melbourne
  • Tallangatta Health Service
  • Warrnambool Medical Clinic
  • Werribee Mercy Hospital
  • Western Health

Western Australia

  • Bentley Hospital
  • CAHS Diabetes Service Perth
  • Kalgoorlie Health Campus
  • Perth Children's Hospital
  • Rockingham General Hospital
  • Royal Perth Hospital
  • Sir Charles Gairdner Hospital
  • Trigg Health Care Centre
Condition
Diabetes
Name
Australian National Diabetes Audit
Weblink

https://www.monash.edu/medicine/anda

Lead organisation
Monash University
Ethics approval reference
Monash Health HREC/17/MonH/117
Program area
Indicators and measurement
Prioritised clinical domain
Diabetes
Abbreviation
ADDN
Registry contact

Meng Tuck Mok, Australasian Diabetes Data Network, info@addn.org.au

Year established
2012
Description

The Australasian Diabetes Data Network (ADDN) is a prospective, longitudinal diabetes registry collecting clinical data from people living with diabetes when they attend paediatric and adult diabetes centres. A primary of goal of ADDN is to undertake benchmarking to compare diabetes health outcomes across diabetes centres in Australasia. Benchmarking reports provided to all participating diabetes centres enable critical analysis of their data integrity, which can then be used to identify gaps in their organisation’s processes and enables sharing or standardisation of best practice. The dataset can therefore further our understanding of the influence of different management practices and therapies for diabetes, and the clinical and demographic predictors of clinical outcomes. The core data, collected routinely at clinic visits, include demographic characteristics, body mass index, glycated haemoglobin (HbA1c), blood pressure, lipids, diabetic ketoacidosis, hypoglycaemia, insulin therapy (injections or pumps), use of continuous glucose monitoring (CGM), diabetes complications and co-morbidities. ADDN also follows young people as they transition from paediatric services into adult care and therefore can describe the longitudinal trajectory of type 1 diabetes across the lifespan.

Reporting process
  • Feedback to contributing clinicians
  • Shared with other clinicians
  • Report on the evaluation of outcomes for the subsidised use of continuous glucose monitoring (CGM) to the Australian Government Department of Health
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • Blacktown Mt Druitt Hospital 
  • Campbelltown Hospital 
  • The Children's Hospital - Westmead
  • Illawarra Shoalhaven, Wollongong
  • Illawarra Shoalhaven - Norwa
  • John Hunter Children's Hospital 
  • Liverpool Hospital 
  • St George Hospital
  • Westmead Hospital 

Queensland

  • Mater Private Hospital - South Brisbane
  • Queensland Children's Hospital 

South Australia

  • Lyell McEwin and Modbury Hospitals
  • Women's and Children's Hospital 

Victoria 

  • Monash Children's Hospital - Clayton Campus
  • The Royal Children's Hospital
  • The Royal Melbourne Hospital - City Campus
  • St Vincent's Hospital, Melbourne
  • Sunshine Hospital - Western Health
  • University Hospital - Barwon Health 

Western Australia

  • Fiona Stanley Hospital
  • Perth Children's Hospital

New Zealand

  • Canterbury District Health Board - Christchurch
  • Starship Children’s Hospital - Auckland
  • Southern District Health Board - Dunedin
  • Waikato District Health Board - Waikato
Condition
Diabetes
Name
Australasian Diabetes Data Network
Weblink

https://www.addn.org.au

Lead organisation
Australasian Paediatric Endocrinology Group and Australian Diabetes Society
Ethics approval reference
Monash Health Human Research Ethics Committee (RES-20-0000-066L)
Hunter New England Human Research Ethics Committee (HREC/08/HNE/379)
Melbourne Health Human Research Ethics Committee (HREC/16/MH/139)
Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/09/QRCH/68/AM04)
Women's and Children's Health Network Human Research Ethics Committee (REC1048-06-2019)
The Royal Children’s Hospital Human Research Ethics Committee (37124 (amendment 37124D))
South Metropolitan Health Service Human Research Ethics Committee (RGS0000000176)
Child and Adolescent Health Service Human Research Ethics Committee (2013051EP)
Northern A Health and Disability Ethics Committee (NTX/12/EXP/076/AM03)
University of Otago Ethics Committee (HD18/098)
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
PCOR-NT
Registry contact

Cheryl Plawecki, NT Radiation Oncology, Alan Walker Cancer Care Centre Royal Darwin Hospital, ProstateRegistry.DoH@nt.gov.au

Year established
2015
Description

The purpose of this registry is to record patients demography, treatments and clinical outcomes to improve quality of care for men diagnosed with prostate cancer. The Registry, PCOR-NT office is located at Alan Walker Cancer Care Centre, Royal Darwin Hospital.  PCOR-NT has registered 427 men with newly diagnosed prostate cancer in its registry (as at 19/07/2021). NT clinical researchers are able to request access to PCOR-NT data through the Steering Committee. PCOR-NT transfer data to PCOR-ANZ for the publication of the annual reports. PCOR-NT Steering Committee Members consist of  Oncologists, Urologists, NT Department of Health Representatives, Prostate Cancer Nurse and Patient Representative.

Reporting process
  • Reported in Annual Report
  • Shared with clinicians
  • Shared with hospital executive
Patient Reported Outcome Measures (PROMs)

The Expanded Prostate Cancer Index Composite  (EPIC-26)  Short Form - a Quality of Life questionnaire

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

https://prostatecancerregistry.org/whos-involved/

Northern Territory

  • Royal Darwin Hospital
  • Alice Springs Hospital
  • Darwin Private Hospital
Condition
Prostate Cancer
Name
Prostate Cancer Outcomes Registry - Northern Territory
Weblink

https://prostatecancerregistry.org/

Lead organisation
Alan Walker Cancer Care Centre, Top End Health Services Northern Territory
Ethics approval reference
Central Australian Human Research Ethics Committee CAHREC-16-392; Menzies School of Health Research HREC2015-2407
Program area
Indicators and measurement

Templates for A-HSOPS 2.0

2021
Template, survey or form

The Commission has developed a range of templates to support hospitals implementing the A-HSOPS 2.0. These can be modified to meet hospitals’ needs.

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