Australian Register of Clinical Registries

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

The Register provides summary information on the purpose and organisation of clinical registries at all stages of development. Clinical registries will be added to this list as the content of each registered clinical registry is curated and prepared for publishing.

The search function allows you to conduct a basic search of the clinical registries for information such as clinical condition, registry name and participating sites. The ‘prioritised clinical domain’ field included in the list is in line with the Prioritised list of clinical domains for clinical quality registry development: Final report. 

Once you find a relevant clinical registry, you will be able to contact the person listed as the ‘Registry contact’ for more information.

  Registry ID   

Prioritised clinical domain Condition Name Abbreviation Weblink Registry contact Year established Description Lead organisation Ethics approval reference    Reporting process Patient Reported Outcome Measures (PROMs) Patient Reported Experience Measures (PREMs) Participating sites
ACSQHC-ARCR-307 High burden cancers Lymphoma and related diseases Lymphoma and related Diseases Registry LaRDR

 https://lardr.org

Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu

2016

The LaRDR uses existing platforms maintained by Monash University’s Department of Epidemiology and Preventive Medicine (DEPM). Data collection is undertaken by clinicians and staff at participating hospitals and private practices, with data entered into an electronic case report form (CRF) by way of a web portal.

The aims of the Australian and New Zealand Lymphoma and Related Diseases Registry (LaRDR) are to:

  • Monitor access to care
  • Benchmark outcomes nationally and internationally
  • Explore variation in practice, process and outcome measures
  • Monitor trends in incidence and survival
  • Explore the factors that influence outcomes including survival and quality of life
  • Act as a resource for clinical trials

Inclusion criteria:

  • Patients with a new diagnosis of non-Hodgkin lymphoma, Hodgkin lymphoma, chronic lymphocytic leukaemia and related diseases
  • Diagnosis within 6 months prior to HREC approval at the site, to minimise retrospective data collection.  However, more detailed retrospective data may be collected in specific sub-groups as determined by the registry steering committee. 
  • Age ≥18 years
  • Cause of death listed as lymphoma.

Exclusion criteria

  • Patients who have chosen to ‘opt-off’ the registry.

The following categories of data items will be collected:

  • Health status at diagnosis
  • Demographic details
  • Laboratory and imaging results at diagnosis
  • Therapy decisions, including including pre-therapy benchmarking, chemotherapy, autologous and allogeneic stem cell transplantation, and maintenance and supportive therapies
  • Outcomes (overall and progression-free survival, duration of response and time to next treatment and QoL measures [using the EQ-5D-5L])
  • Long-term outcomes (through linkage with cancer and death registries).
Monash University

16213A/Monash Health HREC

  • Feedback to contributing clinicians
  • Site specific report is given to each site that is participating
  • Shared with clinicians
  • Reported in Annual Report
Nil Nil

Victoria

  • The Alfred
  • The Austin
  • Ballarat Hospital
  • Box Hill Hospital
  • Epworth Hospital
  • Geelong Hospital
  • Monash Health
  • Peter MacCallum Cancer Centre

Australian Capital Territory 

  • Canberra Hospital

New South Wales

  • Concord Hospital
  • Gosford Hospital
  • St Vincent’s Hospital Sydney

Western Australia

  • Fiona Stanley Hospital
  • Sir Charles Gairnder Hospital

Queensland

  • Gold Coast University Hospital
  • Princess Alexandra Hospital
  • Sunshine Hospital
  • Sunshine Coast University Hospital
  • Toowoomba Hospital

South Australia

  • Royal Adelaide Hospital

Tasmania

  • Royal Hobart Hospital

 

ACSQHC-ARCR-196 High burden cancers Thyroid Cancer Australian and New Zealand Thyroid Cancer Registry ANZTCR

www.anztcr.org.au

Elysia Greenhill, Monash University, anztcr@monash.edu

2017

The purpose of the ANZTCR is to develop a population-based thyroid cancer clinical quality registry to monitor and improve the quality of care provided to individuals diagnosed with thyroid cancer in Australia and New Zealand.

The aim of the ANZTCR is to optimise clinical care by capturing clinical data for all newly diagnosed thyroid cancer patients.

The population includes patients aged ≥ 16 years that have been newly diagnosed, assessed or treated for thyroid cancer at a participating site within the timeframe for inclusion. The ANZTCR uses an opt-out approach to minimise selection bias and to achieve near 100% coverage of the eligible population.

To benchmark clinical care, a consensus set of clinical quality indicators were developed using a modified-Delphi approach (MUHREC #11117). A minimum dataset has been developed to measures outcomes regarding key diagnostic, pathological, clinical, treatment, complications and outcomes from diagnosis to 90-days post-thyroid cancer diagnosis as well as recurrence (if applicable).

Monash University HREC/16/Alfred/61
  • Feedback to contributing clinicians 
  • Shared with clinicians
  • Reported in Annual Report
  • Shared with hospital executive
  • Shared with medical colleges
Not yet collecting PROMs but is planning to in the future Nil

https://anztcr.org.au/index.php/about/participating-health-services-and-districts/

Victoria

  • Alfred Hospital
  • Monash Health (Monash Medical Centre Clayton, Monash Medical Centre Moorabbin, Dandenong Hospital)
  • Western Health (Footscray Hospital, Sunshine Hospital, Williamstown Hospital, Sunshine Radiation Therapy Centre)
  • Frankston Hospital
  • Royal Melbourne Hospital
  • St Vincent's Hospital Melbourne
  • St Vincent's Private Hospital Melbourne
  • Peninsula Private Hospital

New South Wales

  • Hornsby Hospital
  • Royal North Shore Hospital
  • John Hunter Hospital
  • Newcastle Private Hospital
  • The Mater Hospital
  • Maitland Private Hospital
  • Dudley Private Hospital
  • Lake Macquarie Private Hospital
  • Royal North Shore Private Hospital

South Australia

  • Royal Adelaide Hospital
  • Flinders Medical Centre
  • The Queen Elizabeth Hospital

Queensland

  • North West Private Hospital
  • Greenslopes Private Hospital
  • Townsville Hospital
  • The Wesley Hospital Brisbane 
ACSQHC-ARCR-005 Nil Blood transfusion Australian and New Zealand Massive Transfusion Registry ANZ-MTR

https://www.monash.edu/medicine/sphpm/registries/anz-mtr

Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu

2011

The Australian and New Zealand Massive Transfusion Registry (ANZ-MTR) Clinical Dataset brings together data from multiple sources and analyses and reports contemporary information on transfusion practice and patient outcomes following critical bleeding (CB) and massive transfusion (MT) (defined as ≤ 5 RBC units in any 4 hour period during hospital admission) in all clinical settings, including surgery, trauma, obstetrics and gastrointestinal bleeding.  Data on more than 9,200 adult (≤ 18 years) patients from 29 participating sites have already been collected, analysed and the results shared with participants via site reports, presentations and publications.

The ANZ-MTR’s unique and valuable dataset, available to inform policy development and practice improvement, is being transitioned from primarily a research tool to a sustainable operational model to align with Australia’s national safety and quality framework, whilst facilitating research.

ANZ-MTR data are already linked with the Australian and New Zealand National Death Indexes and linkages with other registries (e.g. intensive care, cardiothoracic surgery, trauma, maternity outcomes) to provide expanded data for more sensitive outcome measurement is in progress. 

The ANZ-MTR uses electronic data extraction and data linkage methodologies. Clinical data from hospital data sources, including Laboratory Information Systems (for transfusion history and laboratory results) and Health Information Services databases (for patient demographics and admission data), are electronically extracted by the participating hospitals. The data are then sent securely to the ANZ-MTR, located at Monash University, where the separate information system data are linked to enable detailed analyses that otherwise would not be easily possible. 

Monash University NMA ethics HREC/18/Alfred/85
  • Hospital data and summary reports are provided to the 54 participating sites across Australia and New Zealand.  Presentations on current analyses are made at national and international meetings in addition to publications in the peer-reviewed literature.
  • Reported in other public reports
  • Shared with clinicians and hospital executive - benchmarking and site specific information is provided to contributing hospitals
  • Shared with hospital executive
  • Shared with medical colleges
  • Reported to State/Territory health departments that provide funding 
Nil Nil

Victoria

  • Alfred Hospital
  • Austin Health
  • Barwon Health (University Hospital Geelong)
  • Bendigo Health Service
  • Cabrini Hospital
  • Goulburn Valley Health
  • Mercy Hospital for Women
  • Northern Hospital
  • Peter MacCallum Cancer Centre
  • Royal Melbourne Hospital
  • St John of God, Ballarat
  • St John of God, Geelong
  • St John of God, Bendigo
  • St John of God, Warrnambool
  • Wimmera Base Hospital

New South Wales

  • Concord Hospital
  • Liverpool Hospital
  • Prince of Wales Hospital
  • Royal Hospital for Women
  • Royal Prince Alfred Hospital
  • St George Hospital
  • St Vincent’s Hospital Sydney
  • Sutherland Hospital
  • Westmead Hospital

Queensland

  • Gold Coast Hospital and Health Service
  • Ipswich (West Moreton Hospital & Health Service)
  • Mackay Hospital and Health Service
  • Nambour General Hospital
  • Prince Charles Hospital
  • Princess Alexandra Hospital
  • Royal Brisbane & Women’s Hospital
  • Sunshine Coast University Hospital
  • Townsville Hospital

South Australia

  • Country Health
  • Flinders Medical Centre
  • Royal Adelaide Hospital
  • Women’s and Children’s Hospital

Western Australia

  • Fiona Stanley Hospital
  • Fremantle Hospital
  • King Edward Memorial Hospital
  • Royal Perth Hospital
  • St John of God, Subiaco
  • Sir Charles Gairdner Hospital

Tasmania

  • Launceston General Hospital

New Zealand

  • Auckland City Hospital
  • Christchurch Hospital
  • Middlemore Hospital
  • North Shore Hospital
  • Waikato Hospital
  • Wellington Hospital
ACSQHC-ARCR-447 Adult critical care Patients with cardiac arrest, acute cardiac failure or acute respiratory failure requiring extracorporeal membrane oxygenation Australian and New Zealand extracorporeal membrane oxygenation (ECMO) registry EXCEL

https://www.monash.edu/medicine/sphpm/anzicrc/research/excel

Carol Hodgson, Monash University, carol.hodgson@monash.edu

2019

The use of ECMO is associated with significant costs and risks, and it requires specialist training and expertise. In order to better prepare for the organisation of these complex interventions in the ICU across regions, we need to have accurate data on patients undergoing ECMO. 

The EXCEL registry represents a novel, coordinated effort to create a high-quality, detailed, prospective registry of patients requiring ECMO at Australian ECMO centres. EXCEL includes data on ECMO retrieval, imitation, patient selection, device, cannula and person cannulating, daily data for 7 days, complications, costs and PROMs (HRQoL, disability, return to work, cognitive function) at 6 and 12 months. Additionally we have 4 embedded clinical trials. 

EXCEL can be used to address specific safety concerns, clinical questions and process of care issues. As a result, EXCEL can be designed and implemented to answer new investigator-initiated, hypothesis-driven clinical questions. We currently have 4 embedded clinical trials.

Monash University 43134/Alfred Health HREC
  • Feedback to contributing clinicians - Quarterly reports provided to each participating hospital.
  • Shared with clinicians
  • Reported in Annual Report
  • Shared with consumers
  • Shared with hospital executive
  • Shared with medical colleges
  • Heart Foundation Website
  • Reported to State/Territory health departments - To commence in June 2020
EQ5D-5L, WHODAS 2.0, ADL, IADL, Modified Rankin Scale and MoCA Blind Nil

Australian Capital Territory

  • Canberra Hospital

New South Wales

  • John Hunter Hospital
  • Liverpool Hospital
  • Prince of Wales Hospital
  • Royal North Shore Hospital
  • Royal Prince Alfred Hospital
  • St George Hospital
  • St Vincent’s Hospital Sydney
  • Westmead Hospital

Queensland

  • Gold Coast University Hospital
  • Prince Charles Hospital
  • Princess Alexandra Hospital
  • Royal Brisbane and Women’s Hospital
  • Townsville Hospital

South Australia

  • Flinders Medical Centre
  • Royal Adelaide Hospital

Tasmania

  • Launceston Hospital
  • Royal Hobart Hospital

Victoria

  • Alfred Hospital
  • Austin Hospital
  • Box Hill Hospital
  • Epworth Hospital
  • Frankston Hospital
  • Monash Medical Centre
  • Royal Melbourne Hospital
  • St Vincent’s Melbourne
  • University Hospital Geelong

Western Australia

  • Fiona Stanley Hospital
  • Sir Charles Gairdner Hospital

New Zealand

  • Auckland Hospital
ACSQHC-ARCR-330 High burden cancers Prostate cancer Prostate Cancer Outcomes Registry - Victoria  PCOR-Vic

https://www.monash.edu/medicine/sphpm/pcor-vic

Melanie Evans, Monash University, pcor-vic@monash.edu 2009

PCOR-Vic focuses on describing patterns of care following a diagnosis of prostate cancer, monitoring quality of delivered care and whether it is in line with evidence-based guidelines.

PCOR-Vic is a population-based registry currently capturing 87 per cent of all newly diagnosed cases of prostate cancer in Victoria.

Outcomes measured: Positive margin rate post prostatectomy, documentation of clinical stage, PSA recorded pre-diagnosis and post prostatectomy, advanced disease and appropriate use of active surveillance, disease-specific quality of life at 12 months post treatment or diagnosis (if no treatment has occurred).

Monash University HREC/16/Alfred/98
  • Feedback to contributing clinicians 
  • Shared with clinicians
  • Reported in Annual Report
  • Shared with hospital executive
The Expanded Prostate Cancer Index Composite (EPIC-26), EORTC QLQ - PR25 and questions from the Utilization of Sexual Medications/devices questionnaire (Libido questions only) Nil

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

  • Alfred Hospital (Alfred Health)
  • Alfred Radiation Oncology (Alfred Health)
  • Angliss Hospital (Eastern Health)
  • Austin Hospital (Austin Health)
  • Bairnsdale Regional Health Service
  • Ballarat Health Service
  • Bass Coast Health
  • Beleura Private Hospital (Ramsay Health Care)
  • Bendigo Health
  • Box Hill Hospital (Eastern Health)
  • Cabrini Hospital Brighton
  • Cabrini Hospital Malvern
  • Casey Hospital (Monash Health)
  • Caulfield Hospital (Alfred Health)
  • Central Gippsland Health Service
  • Colac Area Health
  • Dandenong Hospital (Monash Health)
  • Echuca Regional Health
  • Epworth Eastern
  • Epworth Freemasons
  • Epworth Geelong
  • Epworth Hawthorn
  • Epworth Richmond
  • Footscray Hospital (Western Health)
  • Frankston Hospital (Peninsula Health)
  • Geelong Private Hospital
  • GenesisCare Albury Wodonga
  • GenesisCare Berwick
  • GenesisCare Cabrini
  • GenesisCare Epping
  • GenesisCare Footscray
  • GenesisCare Frankston
  • GenesisCare Ringwood
  • GenesisCare St Vincent's
  • Gippsland Radiation Oncology
  • Gippsland Southern Health Service
  • Goulburn Valley Health
  • Healesville Hospital (Eastern Health)
  • Heidelberg Repatriation Hospital (Austin Health)
  • Kerang and District Health
  • Kyabram District Health Services
  • Kyneton District Health Serivce
  • Latrobe Regional Hospital
  • Linarce Private Hospital (Ramsay Health Care)
  • Maroondah Hospital (Eastern Health)
  • Maryvale Private Hospital
  • Masada Private Hospital
  • Mildura Base Hospital
  • Mildura Private Hospital
  • Mitcham Private Hospital (Ramsay Health Care)
  • Monash Medical Centre Clayton (Monash Health)
  • Moorabbin Hospital (Monash Health)
  • Northern Health
  • Peninsula Private Hospital (Ramsay Health Care)
  • Peter MacCallum Cancer Centre - Bendigo
  • Peter MacCallum Cancer Centre - Box Hill
  • Peter MacCallum Cancer Centre - Moorabbin
  • Peter MacCallum Cancer Centre - Parkville
  • Peter MacCallum Cancer Centre - Sunshine
  • Portland District Health
  • Rochester and Elmore District Health Service
  • Rosebud Hospital (Peninsula Health)
  • Royal Melbourne Hospital (Melbourne Health)
  • Sandringham Hospital (Alfred Health)
  • Shepparton Private Hospital (Ramsay Health Care)
  • South Gippsland Hospital
  • South West Healthcare (Warrnambool Base Hospital)
  • St John of God - Ballarat
  • St John of God - Bendigo
  • St John of God - Geelong
  • St John of God - Warrnambool
  • St Vincent's Hospital Melbourne
  • Sunshine Hospital (Western Health)
  • Swan Hill District Hospital
  • The Avenue Private Hospital (Ramsay Health Care)
  • The Bays Private Hospital
  • The Valley Private Hospital
  • University Hospital Geelong
  • Wangaratta Private Hospital (Ramsay Health Care)
  • Wantirna Health (Eastern Health)
  • Warringal Private Hospital (Ramsay Health Care)
  • Waverley Private Hospital (Ramsay Health Care)
  • West Gippsland Healthcare Group
  • Western District Health Service
  • Williamstown Hospital (Western Health)
  • Yarra Ranges Health (Eastern Health)
ACSQHC-ARCR-406

Ischemic heart disease

Cardio thoracic surgery

Australian and New Zealand Society of Cardiac and Thoracic Surgeons Database Program

ANZSCTS Database

https://anzscts.org/database/

Lavinia Tran, Monash University, lavinia.tran@monash.edu

2001

The ANZSCTS Database Program records details of all adult cardiac surgical procedures performed in participating hospitals in Australia and New Zealand. It has complete coverage of all public hospitals in Australia and a large majority of private hospitals.

The Program has established a quarterly peer review and monitoring process which measures and benchmarks key performance indicators in cardiac surgery including: mortality, stroke, new renal insufficiency, bleeding and deep sternal would infection. The program also publishes comprehensive annual reports describing the activities and outcomes of participating sites in a comparative de-identified format.

Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS)

262/09, Alfred Health Ethics Committee

  • Feedback to contributing clinicians; Hospitals and surgeons have access to their own data via the online web portal
  • Shared with clinicians
  • Reported in Annual Report
  • Reported in other public reports
  • Shared with hospital executive
  • Shared with medical colleges
  • Reported to State/Territory health departments 
Nil Nil

Western Australia

  • Fiona Stanley Hospital
  • Sir Charles Gairdner Hospital
  • St John of God Hospital (Subiaco)
  • Mount Hospital

South Australia

  • Flinders Medical Centre
  • Royal Adelaide Hospital
  • Ashford Hospital
  • Flinders Private

Victoria

  • Austin Health 
  • Royal Melbourne Hospital
  • Monash Medical Centre
  • St Vincent's Hospital
  • University Hospital Geelong
  • The Alfred
  • Epworth Richmond
  • Epworth Eastern
  • Cabrini Health
  • Jessie McPherson Private
  • Peninsula Private
  • Warringal Private
  • Knox Private
  • Melbourne Private

Queensland

  • Prince Charles Hospital
  • Princess Alexandra Hospital 
  • Gold Coast University
  • Townsville Hospital 
  • John Flynn Private
  • Greenslopes Private
  • Sunshine Coast University Private

New South Wales

  • John Hunter Hospital 
  • Prince of Wales Hospital
  • Westmead Hospital
  • St George Hospital
  • St Vincent's Hospital 
  • Liverpool Hospital 
  • Royal North Shore Hospital 
  • Royal Prince Alfred Hospital 
  • Lake Macquarie Private
  • St George Private
  • Westmead Private
  • Strathfield Private
  • Newcastle Private
  • Norwest Private
  • Prince of Wales Private
  • Northern Beaches Hospital

Australian Capital Territory

  • Canberra Hospital
  • National Capital

New Zealand

  • Auckland Hospital
ACSQHC-ARCR-371 Nil Congenital hand and upper limb differences Australian Hand Difference Register AHDR

 https://www.mcri.edu.au/ahdr

Joanne Kennedy, Murdoch Children's Research Institute, joanne.kennedy@mcri.edu.au

2017

The Australian Hand Difference Register (AHDR) is a database of information about children in Australia who were born with a hand and/or arm difference. The AHDR aims to:

  • find out how many children are born with a hand/arm difference in Australia
  • learn more about specific causes and risk factors
  • gain information to help plan services
  • identify possible participants for future research

The information gathered will contribute to future improvements in the health and well being of children born with hand differences by identifying clinical pathways and if possible, preventative strategies.

Murdoch Children's Research Institute

HREC/17/RCHM/4, The Royal Children’s Hospital HREC

  • Feedback to contributing clinicians
  • Shared with clinicians
  • Reported in Annual Report
Nil Nil

Victoria

  • The Royal Children’s Hospital
  • Monash Children’s Hospital

New South Wales

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

Queensland

  • Queensland Children’s Hospital
  • Gold Coast University Hospital (governance approval pending)

South Australia

  • Women’s and Children’s Hospital Adelaide

Western Australia

  • Perth Children’s Hospital
ACSQHC-ARCR-199

High burden cancers

Prostate Cancer

South Australian Prostate Cancer Clinical Outcomes Collaborative

SA-PCCOC

https://www.prostatehealth.org.au/

Michael O'Callaghan, Flinders Medical Centre, michael.ocallaghan@health.sa.gov.au

1998

A comprehensive population based clinical quality registry for South Australia. The overall objective of the database is to evaluate the standard of care for men with prostate cancer in South Australia by monitoring the outcomes of that care over time.

Flinders Medical Centre 307.14; Southern Adelaide Clinical HREC
  • Feedback to contributing clinicians
  • Shared with clinicians
  • Annual report
  • PROMS Function – Patient assessment of urinary, sexual, and bowel function at 12 months post treatment.
  • PROMS Bother – Patient assessment of urinary, sexual, and bowel bother at 12 months post treatment.
EPIC-26, IPSS, plus demographics
  • Royal Adelaide Hospital
  • The Queen Elizabeth Hospital
  • Flinders Medical Centre/Repatriation General Hospital
  • Noarlunga Hospital
  • Lyell McEwin 
  • Calvary North Adelaide Hospital
  • St Andrews Hospital
  • Ashford Hospital, Genesis Care
ACSQHC-ARCR-044 High burden cancers Bone and soft tissue tumours Australian Comprehensive Cancer Outcomes and Research Database (ACCORD) Sarcoma Database ACCORD Sarcoma Database

http://biogrid.blob.core.windows.net/assets/uploads/files/data-forms/BS…

Susie Bae, Peter MacCallum Cancer Centre, susie.bae@petermac.org

2009

The Australia and New Zealand Sarcoma Association (ANZSA) supports sarcoma data collection at six major sarcoma referral centres around Australia through the ACCORD sarcoma database.

Data collection was initiated as a pilot in 2009, firstly at Peter MaCallum Cancer Centre, and subsequently expanded to include additional sites. Each hospital has HREC approval in place for ongoing data collection for research purposes and only custodians of ethically approved studies can access de-identified data. Single-site and multi-site audits and patterns of care studies have been conducted and ANZSA produces six-monthly data reports and encourages the engagement of sarcoma researchers in utilising the sarcoma registry. 

The Australia and New Zealand Sarcoma Association HREC 06/08 Petermac
  • Feedback to contributing clinicians via biannual ANZSA reporting to ANZSA members
  • Shared with clinicians
  • Shared with medical colleges
Nil Nil
  • Peter MacCallum Cancer Centre
  • Chris O'Brien Life House
  • Prince of Wales Hospital
  • Sir Charles Gardiner Hospital
  • Royal Adelaide Hospital
  • The Canberra Hospital
ACSQHC-ARCR-483 High burden cancer Gynaecological Malignancies The National Gynae-Oncology Registry NGOR

https://ngor.org.au/

Natalie Heriot, Monash University, natalie.heriot@Monash.edu

2017

The NGOR is a multi-module clinician-led clinical quality registry managed within the Monash University Department of Epidemiology and Preventive Medicine. The registry collects data on women with newly diagnosed cancers of the ovary/ovaries, fallopian tube(s), peritoneum, vulva, vagina, cervix and endometrium which it uses to monitor and report back to sites and clinicians on performance against measures of agreed 'best practice' called quality indicators.

Upon registry maturity, the NGOR is expected to contribute to improved patient outcomes through the identification of variation in care and investigation into whether this variation is warranted or not. The ovarian cancer module (which covers ovarian, tubal and peritoneal cancers) includes a set of carefully chosen quality indicators to reflect current best practice guidelines and Australian standards, developed in consultation with gynaecologic oncologists and other specialists.

The registry is in the process of developing quality indicators for additional registry modules covering cancers of the endometrium, cervix, vulva and vagina.

The NGOR is endorsed by the Australian Society of Gynaecologic Oncologists (ASGO), >20 gynaecologic oncologists and medical oncologists specialising in gynaecological cancers, and the patient advocacy group Ovarian Cancer Australia. Data are collected primarily from pre-existing clinical unit databases from major gynaecologic cancer treatment centres and private practices. There are a number of private and public health services participating across Victoria, New South Wales and Tasmania with sites in Western Australia to be added in the short-term.

The NGOR operates under an opt-out model of recruitment and is governed by a committee of clinical experts, registry experts, a consumer representative, Ovarian Cancer Australia representatives and more.

Monash University HREC-17-MonH-198
  • Feedback to contributing clinicians
  • Shared with clinicians
  • Shared with hospital executive
  • Reported in Annual Report
Planned for 2020 To be determined 
  • Monash Health
  • Royal Women's Hospital
  • Epworth Healthcare
  • Mercy Hospital for Women
  • Cabrini Health
  • Warringal Private Hospital
  • Peter MacCallum Cancer Centre
  • Frances Perry House 
  • Werribee Mercy Hospital
  • St Vincent's Hospital Melbourne
  • Westmead Hospital
  • Westmead Private Hospital
  • St George Hospital
  • St George Private Hospital
  • Prince of Wales Private Hospital
  • Chris O'Brien LifeHouse
  • John Hunter Hospital  
  • Royal Hobart Hospital
  • Hobart Private Hospital
  • King Edward Memorial Hospital 
  • St John of God Subiaco Hospital 
ACSQHC-ARCR-432 High burden cancer Lung cancer Victorian Lung Cancer Registry VLCR

https://vlcr.org.au

Robert Stirling, Monash University, r.stirling@alfred.org.au

Please cc Margaret.brand@monash.edu and med-vlcr@monash.edu 

2011

Despite recent improvements in diagnosis and treatment, prognosis for lung cancer remains poor, with a 5-year survival of just 17% and it continues to be the biggest contributor to Australia’s overall cancer burden, as calculated by disability-adjusted life years. The Victorian Lung Cancer Registry (VLCR) is a CQR that captures real-world data for approximately 85% of all patients newly diagnosed with lung cancer in Victoria. The VLCR has continued to expand over the past 8 years and in 2019, the VLCR will collect clinical data care from diverse institutions including public metropolitan hospitals (n=27), private metropolitan hospitals (n=16), public regional hospitals (n=9) and private regional hospitals (n=8).

Purpose: The VLCR aims to identify and reduce unwarranted variation in lung cancer care and to drive continued improvement in the quality of care provided to patients. This registry provides bench-marked risk-adjusted reports to participating sites, reflecting site performance against clinical quality indicators reflecting agreed best practice.  Key to the success of the VLCR is the peer reviewed bench-marked data, which is used to motivate change in both institutional and clinical practice.

Population: The VLCR includes all subjects with newly diagnosed Non Small Cell and Small Cell Lung Cancer.

Outcomes:  the VLCR provides 22 measures including time to first treatment, mortality after treatment (surgery and chemotherapy), presentation at multi-disciplinary meetings (MDMs), use of supportive care measures (supportive care screening) and referral to palliative care.

Monash University HREC/16/Alfred/84
  • Feedback to contributing clinicians  via site Principal Investigator, the VLCR reports are de-identified for treating clinician
  • Shared with clinicians
  • Reported in Annual Report
  • Reported in other public reports
  • Shared with consumers
  • Shared with hospital executive
  • Reported to State health department
Patient Reported Outcome Measures will be collected in 2020. These are assessments of overall health and quality of life as reported by patients at specific time points after diagnosis. Patient Reported Experience Measures will be collected in 2020.
  • Alfred Health (Alfred Hospital, Caulfield, Sandringham)
  • Austin Health (Austin Health, Heidelberg repat, Royal Talbot, Olivia-Newton John Cancer Centre)
  • Eastern Health (Angliss, Box Hill, Maroondah, Peter James)
  • Monash Health (Monash Medical Clayton, Casey, Dandenong, Moorabbin)
  • Northern Health
  • Peninsula Health (Frankston, Rosebud)
  • Peter MacCallum Cancer Centre
  • Royal Melbourne Hospital (Royal Park, City Campus)
  • St Vincent’s Public (St Vincent’s Public, Caritas, St Georges)
  • Western Health (Footscray, Sunshine, Williamstown)
  • Cabrini Health (Cabrini Malvern, Brighton, Prahran, Elsternwick, Hopetoun)
  • Epworth Health (Richmond, Eastern, Freemasons, Geelong, Brighton, Camberwell
  • St Vincent’s Private (Fitzroy, East Melbourne)
  • Genesis Care (Frankston, Epping, Ringwood)
  • Albury Wodonga Health
  • Ballarat Hospital
  • Barwon Health (Geelong Hospital)
  • Bendigo Health
  • Goulburn Valley Health
  • Latrobe Hospital
  • South West Healthcare (Warrnambool, Portland, Hamilton)
  • Ramsay Health (Peninsula, Mildura, Border Medical Oncology)
  • St John Of God (Geelong, Ballarat, Bendigo, Warrnambool, Berwick)
ACSQHC-ARCR-438 High burden cancer Multiple myeloma and related diseases Myeloma and related Diseases Registry MRDR

http://www.mrdr.net.au/

Transfusion Research Unit, Monash University, sphpm-myeloma@monash.edu

2012

This prospective clinical quality registry aims to improve myeloma outcomes by providing an evidence-base for the best strategies to diagnose, treat and support people with myeloma and related diseases. It is a registry of newly diagnosed patients with multiple myeloma, MGUS, plasma cell leukaemia or plasmacytoma. It collects information on demographics, diagnosis, treatment, response to therapy and outcomes including survival, progression free survival and quality of life.

The aims of the Myeloma & Related Diseases Registry are to:

  • Monitor access to care
  • Benchmark outcomes nationally and internationally
  • Explore variation in practice, process and outcome measures
  • Monitor trends in incidence and survival
  • Explore the factors that influence outcomes including survival and quality of life
  • Act as a resource for clinical trials

The MRDR has an industry-funded "sister registry", the Asia-Pacific MRDR (APAC MRDR), with the same aims and  purpose. The APAC-MRDR collects data that mirrors the ANZ registry from Korea, Singapore, and Malaysia with other countries to follow.

Monash University HREC/16/Alfred/126
  • Feedback to contributing clinicians in six monthly site data reports
  • Reported in Annual Report
  • Shared with clinicians
  • Shared with hospital executive
  • Publish quarterly registry updates in MyeNews, published by Myeloma Australia, a national myeloma patient advocacy foundation
Collect EQ-5D-5L Nil

https://www.mrdr.net.au/about-us/participating-sites/

  • The Alfred Hospital
  • Princess Alexandra Hospital
  • Middlemore Hospital
  • Royal Prince Alfred Hospital
  • Sir Charles Gairdner Hospital
  • Peninsula Health (Frankston)
  • Austin Hospital
  • Northern Health  (Northern Hospital)
  • The Royal Melbourne Hospital
  • St George Hospital
  • Royal Melbourne /Peter Mac
  • Monash Health (MMC)
  • Cabrini - Malvern 
  • St Vincent's Hospital, Melbourne
  • Eastern Health (Box Hill)
  • Christchurch Hospital, NZ
  • Royal Hobart Hospital
  • Flinders Medical Centre
  • Latrobe Regional Hospital
  • Concord Repatriation General Hospital
  • ICON Cancer Care
  • Royal Brisbane and Women's Hospital
  • Lismore Hospital
  • Royal Darwin Hospital
  • Royal North Shore Hospital
  • Jarrett St Specialist Centre
  • Adelaide Cancer Centre
  • Bairnsdale Regional Health Service
  • Central Gippsland Health Service (Sale Hospital)
  • Dunedin Hospital
  • Epworth Freemasons Hospital
  • Hollywood Private Hospital (WA)
  • Wellington Hospital (NZ)
  • Liverpool Hospital
  • Nelson Hospital (NZ)
  • St Vincent's Hospital, Sydney
  • Toowomba Hospital
  • Townsville Hospital
  • Whangarei Hospital (NZ)
  • University Hospital Geelong
  • Nepean Cancer Care
  • Launceston Hospital
  • Border Medical Oncology
ACSQHC-ARCR-471 Musculoskeletal disorders 

Inflammatory arthritis: (rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA) and juvenile idiopathic arthritis (JIA)

Australian Rheumatology Association Database

ARAD

https://aradwebsite.wixsite.com/arad

Ashley Fletcher, Project Manager, ashley.fletcher@monash.edu

2003

The Australian Rheumatology Association Database (ARAD) was established as a national arthritis database to provide valid and reliable longitudinal clinical data of people with inflammatory arthritis in Australia, with the ultimate aim of providing better care and improving outcomes for patients. It became operational in August 2003.

The aims of ARAD are to establish a specific cohort of Australian patients with inflammatory arthritis receiving anti-tumour necrosis factor (TNF) and other biological disease modifying anti-rheumatic drug (bDMARD) therapies together with a group of patients not receiving bDMARDs to determine long-term safety and effectiveness of the biological therapies.

ARAD provides reports of patient outcomes to participating rheumatologists with a comparison of grouped de-identified data from other rheumatologists. ARAD also reports on treatment side effects and reasons for stopping or changing therapy.

Patient demographic and clinical measures including medication history, adverse events, medical illnesses, malignancy and infections, hospitalisation.

Australian Rheumatology Association Cabrini Human Research Ethics Committee: 12-23-04-01
  • Feedback to contributing clinicians
  • Shared with consumers
  • Reported in Annual Report
  • Annual report to Australian Rheumatology Association Board

Disease status, quality of life and physical function (Health Assessment Questionnaire (HAQ) (specific for each disease group), Assessment of Quality of Life Questionnaire (AQoL), SF-36, European Quality of Life and the Paediatric Quality of Life Inventory (for JIA), the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) (for AS)).

Nil ARAD is based at Monash University and Cabrini Health but collects nationally. Contact ARAD for individual public and private clinicians and hospitals.

ACSQHC-ARCR-496

Musculoskeletal disorders Joint replacement surgery Barwon Joint Registry Nil

http://bcore.deakin.edu.au/

Richard Page, St John of God Hospital Geelong, Australia, richard.page@deakin.edu.au

1988

The aim of the Barwon Joint Registry is to provide a mechanism for quality assurance, quality improvement and research. 

The registry monitors all consenting patients undergoing joint replacement surgery at University Hospital Geelong and hip, knee and shoulder replacements at St John of God Hospital Geelong.

The registry is an opt-out, prospective database.

Outcomes include patient reported outcomes (pain, function, quality of life), complications, operative details including prosthesis type, patient details and co-morbidities.

Barwon Health, Geelong, Australia. St John of God Hospital Geelong, Australia.

12-95, Barwon Health and St John of God Healthcare

  • Feedback to contributing clinicians
  • Shared with clinicians
  • Reported in Annual Report
  • Shared with consumers
  • Shared with hospital executive
  • Shared with medical colleges
  • Oxford Scores (hip, knee, shoulder)
  • EQ-5D-5L
  • Multi-attribute Predictor Tool (MAPT)
  • WOMAC
  • Constant Shoulder Score
  • Quick DASH
  • Patient Expectations
  • Patient Satisfaction
Nil
  • University Hospital Geelong
  • St John of God Hospital Geelong
ACSQHC-ARCR-322 Nil Breast device surgery The Australian Breast Device Registry ABDR

https://www.abdr.org.au/

Ingrid Hopper, Monash University, ingrid.hopper@monash.edu

2015

The Australian Breast Device Registry (ABDR) is a Commonwealth-funded Monash University-led health initiative and is endorsed by major surgical societies in Australia. The ABDR’s continuing mission is to improve patient outcomes by identifying and reporting on possible trends and complications associated with breast device surgery; tracking the long-term safety and performance of implantable breast devices; monitoring performance of breast devices and benchmarking the quality of surgery involving breast implants, breast tissue expanders and acellular dermal matrices; and identifying best surgical practice and optimal patient health outcome.

The ABDR collects information about breast devices using a simple data collection form (DCF) completed by surgeons at the time of surgery across the eligible sites Australia-wide. ABDR collects data related to all surgical procedures involving breast implants, breast tissue expanders and acellular dermal matrices (or similar) undertaken nationally. This include insertions, revisions of in situ devices, and explants without replacement. Information from the DCFs generates a powerful set of accurate and validated data that can be analysed and reported to individual surgeons, hospitals, the department of health and other key stakeholders.

The ABDR produces information on device failure rates, complications and revision rates of procedures involving breast devices nationally. Additional to data collected at the time of surgery and revision surgery, the ABDR asks patients brief questions about their health at 1, 2, 5 and 10 years post-surgery. This sub-study is named as Patient Reported Outcome Measures (PROMs).

Monash University

Multiple HRECs, lead site is Alfred Hospital HREC 5/15 and Monash University

  • Feedback to contributing clinicians
  • Shared with clinicians
  • Shared with consumers
  • Shared with hospital executive
  • Reported in Annual Report
  • Reported in other public reports
BREAST-Q Implant Surveillance module (BREAST-Q IS) Nil

https://www.abdr.org.au/about-us/participating-sites/

Victoria

  • Austin Hospital
  • Ballarat Base Hospital
  • Beleura Private Hospital
  • Bellbird Private Hospital
  • Bendigo Day Surgery
  • Bendigo Hospital
  • Box Hill Hospital
  • Broadmeadows Hospital
  • Cabrini Hospital- Brighton
  • Cabrini Hospital – Malvern
  • Casey Hospital
  • Corymbia House
  • Cotham Private Hospital
  • Dandenong Hospital
  • Dr Lanzers Cosmetic Surgery
  • Eastlink Surgical & Specialist Centre (closed)
  • Epworth Cliveden
  • Epworth Eastern
  • Epworth Freemasons
  • Epworth Geelong
  • Epworth Hawthorn
  • Epworth Richmond
  • Footscray Hospital
  • Frances Perry House
  • Frankston Hospital
  • Glenferrie Private Hospital
  • Goulburn Valley Health
  • Hamilton Base Hospital
  • Holmesglen Private Hospital
  • John Fawkner Private Hospital
  • Knox Private Hospital
  • Linacre Private Hospital
  • Linley Clinic (closed)
  • Maroondah Hospital
  • Maryvale Private Hospital
  • Masada Private Hospital
  • Melbourne Private Hospital
  • Mitcham Private Hospital
  • Monash House Private Hospital
  • Moorabbin Hospital
  • Northpark Private Hospital
  • Peninsula Private Hospital
  • Peter MacCallum Cancer Centre
  • Repatriation Hospital (The Surgery Centre)
  • Ringwood Private Hospital
  • Shepparton Private Hospital
  • Sir John Monash Private Hospital
  • St John of God Ballarat
  • St John of God Bendigo
  • St John of God Berwick
  • St John of God Geelong
  • St John of God Warrnambool
  • St Kilda Day Hospital
  • St Vincent’s Private Hospital East Melbourne
  • St Vincent’s Private Hospital Fitzroy
  • St Vincent’s Private Hospital Kew
  • St Vincent’s Private Hospital Werribee
  • Stonnington Day Surgery
  • Sunshine Hospital
  • The Alfred Hospital
  • The Avenue Hospital
  • The Bays Hospital
  • The Melbourne Eastern Private Hospital
  • The Northern Hospital
  • The Royal Children’s Hospita
  • The Royal Melbourne Hospital
  • The Royal Women’s Hospital
  • The Valley Private Hospital
  • University Hospital Geelong
  • Victorian Cosmetic Institute Day Surgery
  • Warringal Private Hospital
  • Warrnambool Base Hospital
  • Waverley Private Hospital
  • Western Private Hospital
  • Williamstown Hospital
  • Windsor Private Hospital
  • Wyndham Clinic Private Hospital

Western Australia

  • Bethesda Hospital
  • Bunbury Day Surgery
  • Cambridge Day Surgery
  • Colin Street Day Surgery
  • Concept Fertility Centre and Day Hospital
  • Glengarry Private Hospital
  • Hollywood Private Hospital
  • Joondalup Health Campus
  • Mount Hospital
  • Peel Health Campus
  • St John of God Bunbury Hospital
  • SJOG Midland Public & Private Hospital (previously Swan District Hospital)
  • St John of God Mt Lawley Hospital
  • St John of God Murdoch Hospital
  • St John of God Subiaco Hospital
  • St John of God Wembley Day Surgery
  • Southbank Day Surgery
  • Subiaco Private Hospital
  • Waikiki Private Hospital
  • West Leederville Private Hospital

Australian Capital Territory

  • Barton Private Hospital
  • Calvary Bruce Private Hospital
  • Calvary Bruce Public Hospital
  • Calvary John James Hospital
  • Canberra Private Hospital
  • National Capital Private Hospital
  • Sole’vita Surgery

Tasmania

  • Calvary Health Care Tasmania St John’s Campus
  • Calvary Health Care Tasmania St Vincent’s Campus
  • Hobart Private Hospital
  • Launceston General Hospital
  • North Tas Day Hospital
  • Royal Hobart Hospital

Northern Territory

  • Darwin Day Surgery
  • Darwin Private Hospital
  • Royal Darwin Hospital

New South Wales

  • Aesthetic Day Surgery
  • Alexandria Specialist Day Hospital
  • Artarmon Day Surgery
  • Auburn Hospital NSW
  • Australia Plastic Surgery Sydney
  • Bankstown-Lidcombe Hospital
  • Baringa Private Hospital
  • Bathurst Base Hospital
  • Bathurst Private Hospital
  • Belmont Hospital
  • Bondi Junction Private Hospital
  • Brisbane Waters Private Hospital
  • Calvary Mater Newcastle
  • Calvary Riverina Hospital, Wagga Wagga
  • Campbelltown Private Hospital
  • Castlecrag Private Hospital
  • Castle Hill Day Surgery (closed)
  • Charlestown Private Hospital
  • Concord Repatriation General Hospital
  • Crows Nest Day Surgery
  • Double Bay Day Hospital
  • Double Bay Day Surgery
  • East Sydney Private Hospital
  • Gosford Hospital
  • Gosford Private Hospital
  • Holroyd Private Hospital
  • Honeysuckle Day Surgery
  • Hornsby and Ku-ring-gai Hospital
  • Hospital for Specialist Surgery
  • Hunter Valley Private Hospital
  • Hunters Hill Private Hospital
  • Hurstville Private Hospital
  • Kareena Private Hospital
  • Kingsgrove Day Hospital
  • Kingsway Day Surgery
  • Lake Macquarie Private Hospital
  • Lingard Private Hospital
  • Liverpool Hospital
  • Macquarie St Day Surgery
  • Macquarie University Hospital
  • Maitland Private Hospital
  • Mater Hospital, North Sydney
  • Mount Druitt Hospital
  • My Cosmetic Clinic
  • Nepean Hospital
  • Nepean Private Hospital
  • Northern Beaches Hospital
  • North Shore Private Hospital
  • North Shore Specialist Day Hospital
  • Norwest Day Hospital
  • Norwest Private Hospital
  • Nowra Private Hospital
  • Pittwater Day Surgery
  • Port Macquarie Private Hospital
  • Prince of Wales Hospital
  • Prince of Wales Private Hospital
  • Riverina Day Surgery
  • Royal Hospital for Women, Sydney
  • Royal North Shore Hospital
  • San Day Surgery, Hornsby
  • Southern Highlands Private Hospital
  • St George Hospital
  • St Luke’s Private Hospital
  • St Vincent’s Hospital
  • St Vincent’s Private Community Hospital, Griffith
  • St Vincent’s Private Hospital, Sydney
  • Strathfield Private Hospital
  • Surry Hills Day Hospital
  • Sydney Adventist Hospital
  • Sydney Day Hospital
  • Sydney Private Hospital
  • Sydney Southwest Private Hospital
  • Sydney Surgical Centre
  • Tamara Private Hospital
  • Tamworth Base Hospital
  • The Tweed Hospital
  • Wagga Wagga Rural Referral Hospital
  • Waratah Private Hospital
  • Warners Bay Private Hospital
  • Westmead Hospital
  • Westmead Private Hospital
  • Westside Private Hospital
  • Wollongong Day Surgery
  • Wollongong Hospital
  • Wollongong Private Hospital

South Australia

  • Adelaide Day Surgery
  • Ashford Hospital
  • Brighton Day Surgery
  • Burnside War Memorial Hospital
  • Calvary North Adelaide Hospital
  • Calvary Wakefield Hospital
  • Calvary Wakefield Surgicentre
  • Flinders Medical Centre
  • Flinders Private Hospital
  • Glenelg Community Hospital
  • Hamilton House Day Surgery
  • Lyell McEwin Hospital
  • Modbury Hospital
  • Noarlunga Hospital
  • North Adelaide Day Surgery
  • Norwood Day Surgery
  • Parkside Cosmetic Surgery
  • Royal Adelaide Hospital
  • St Andrew’s Hospital
  • The Memorial Hospital
  • The Stirling District Hospital
  • The Queen Elizabeth Hospital
  • The Western Hospital
  • Waverley House Plastic Surgery Centre
  • Women’s and Children’s Hospital

Queensland

  • Brisbane Day Hospital
  • Brisbane Private Hospital
  • Caboolture Private Hospital
  • Cairns Base Hospital
  • Cairns Day Surgery
  • Cairns Private Hospital
  • Canossa Private Hospital
  • Chermside Day Hospital
  • Far North Day Hospital (Cairns Central Day Hospital)
  • Friendly Society Private Hospital
  • Gold Coast Private Hospital
  • Gold Coast Surgical Hospital (closed)
  • Gold Coast University Hospital
  • Greenslopes Private Hospital
  • Hillcrest Rockhampton Private Hospital
  • Ipswich Day Hospital
  • John Flynn Private Hospital
  • Kawana Private Hospital
  • Mater Hospital Brisbane
  • Mater Hospital Pimlico
  • Mater Private Hospital Brisbane
  • Mater Private Hospital Springfield
  • Mater Women’s and Children’s Hospital Hyde Park
  • Mercy Health Gladstone – Mater Misericordiae Hospital Gladstone
  • Mercy Health Mackay – Mater Misericordiae Hospital Mackay
  • Mercy Health Rockhampton – Mater Misericordiae Hospital Rockhampton
  • Miami Day Hospital
  • Montserrat – Gaythorne Day Hospital
  • Montserrat – North Lakes Day Hospital
  • Montserrat – Samford Road Day Hospital
  • Noosa Hospital
  • North West Private Hospital
  • Pacific Day Surgery
  • Pacific Private Day Hospital
  • Pindara Day Procedure Centre
  • Pindara Private Hospital
  • Princess Alexandra Hospital
  • Queen Elizabeth II Jubilee Hospital
  • Redland Hospital
  • Renaissant Aesthetic Health
  • Rockhampton Hospital
  • Robina Hospital
  • Royal Brisbane & Women’s Hospital
  • South Bank Day Hospital
  • Southport Day Hospital
  • Spring Hill Specialist Day Hospital
  • St Andrew’s Private Hospital Ipswich
  • St Andrew’s Toowoomba Hospital
  • St Vincent’s Private Hospital – Brisbane
  • St Vincent’s Private Hospital – Holy Spirit Northside
  • Sunshine Coast Day Surgery
  • Sunshine Coast University Private Hospital
  • Toowoomba Surgicentre
  • Townsville Hospital
  • UnitingCare – Buderim Private Hospital
  • UnitingCare – St Andrew’s War Memorial Hospital
  • UnitingCare – St Stephen’s Hospital
  • UnitingCare – The Wesley Hospital
  • Varsity Lakes Day Hospital
ACSQHC- ARCR-080 Nil Immune-mediated Inflammatory Myopathies  The Australasian Myositis Registry The Myositis Registry

https://myositis.production.akumen-cloud.com/

Kelly Beer, Institute for Immunology and Infectious Diseases, Murdoch University, and the Perron Institute, k.beer@iiid.murdoch.edu.au

2019

The Australasian Myositis Registry (‘Myositis Registry’) is a multi-centre, international, longitudinal, observational program for patients with myositis that has been designed to track the natural history and progression of the disease and patient outcomes.

The benefits of the Myositis Registry are twofold: for clinicians and researchers, the Myositis Registry will provide an important tool for novel insights into disease mechanisms, diagnostic tools and identify potential treatments and targets for therapies; and for patients the Myositis Registry will offer an opportunity to take an active role in their clinical care via a ‘Patient Portal’, which allows the patient to access their data and monitor their condition.

The Myositis Registry also provides a research feasibility and recruitment facility, as the database population can be analysed to identify potential research candidates and determine study feasibility within disease sub-groups, including for studies with extensive phenotype inclusion criteria. Potential research participants can be notified of research opportunities without their confidentiality being compromised, allowing the patient to make informed choices regarding research participation.

Myositis Discovery Programme, a project supported by the Perron Institute, Murdoch University, University of Notre Dame Australia, and Fiona Stanley Hospital 2019-007 Murdoch University Human Research Ethics Committee
  • Feedback to contributing clinicians – summary reports
  • Shared with other clinicians – anonymised data sets available on request.
  • Shared with hospital executive
  • Shared with consumers – consumers can log into a ‘patient portal’ and information also fed back via consumer advocacy groups.
  • Shared with medical colleges
  • Reported to State/Territory health departments – as requested
  • Reported in Annual Report – within annual reports from the sponsoring institutions
  • Reported in other public reports
  • Manual Muscle Testing (MMT)
  • IBM Functional Rating Scale (IBM-FRS)
  • Short Form 36 (SF-36)
  • Health Assessment Questionnaire (HAQ)
  • Patient Global Activity (PaGA)
  • Physician Global Activity (PhGA)
  • Myositis Disease Activity Assessment Tool (MDAAT)
Nil
  • Institute of Immunology and Infectious Diseases (IIID)
  • Murdoch University and The Perron Institute for Translational and Neurological Sciences (both WA) – Lead Site.

Local sites will be added throughout 2020.

ACSQHC- ARCR-269 Ischemic heart disease Cardiac procedures and devices Victorian Cardiac Outcomes Registry VCOR

http://vcor.org.au/

Angela Brennan, Monash University, angela.brennan@monash.edu 2013

The VCOR is a Clinical Quality Registry collecting data on selecting cardiac procedures such as percutaneous coronary intervention (PCI). VCORs mandate is to undertake analyses of collective hospital data to produce meaningful reports for hospitals based on clinically relevant quality indicators. For PCI this allows hospitals to benchmark themselves and assess their performance on a quarterly and annual basis, with all hospitals who undertake PCI in the state of Victoria contributing all cases. Selected hospitals contribute to the data collection for cardiac implantable electronic devices (CIED's), with 6 monthly annual reports provided. 

VCORs aims include:

  1. Benchmarking outcomes to stimulate improvement in patient care
  2. Identifying areas of excellence as well as opportunities for improvement across the entire system of care
  3. Providing an impetus for maximising performance
  4. Applying relevant, emerging best practice principles and share knowledge
  5. Accounting for individual and cohort-related risk factors when assessing outcomes
  6. Providing insight into the medium and long-term safety of cardiac devices, treatments and procedures
  7. Identifying geographical or socioeconomic disparity in care.

The outcomes measured and reported for PIC include:

  • In-hospital and 30-day Mortality 
  • In-hospital and 30-day Unplanned revascularisation
  • In-house Major Bleeding
  • 30-day Major Adverse Cardiac and Cerebrovascular Events
  • Risk Adjusted 30 Day Mortality (reported annually)
  • Door To Balloon Time (for Primary PCI STEMI cases)
  • Length of hospital stay

VCOR undertakes a rigorous, independent audit program for PCI.

Monash University

47/12 Victorian Cardiac Outcomes Registry, The Alfred Hospital HREC.

All hospitals have HREC approval.

  • Feedback to contributing clinicians (via annual report & access to online reports)
  • Shared with clinicians
  • Reported in Annual Report
  • Reported in other public reports
  • Shared with consumers
  • Shared with hospital executive
  • Shared with medical colleges
  • Reported to State/Territory health departments
Nil Nil

https://vcor.org.au/participating-sites

Percutaneous Coronary Intervention Hospital

  • Alfred Hospital
  • Austin Hospital
  • Ballarat Base Hospital
  • Bendigo Hospital
  • Box Hill Hospital
  • Cabrini Hospital Malvern
  • Epworth Hospital Eastern
  • Epworth Hospital Geelong
  • Epworth Hospital Richmond
  • Footscray Hospital;
  • Frankston Hospital
  • Holmesglen Private Hospital
  • Jessie McPherson Private Hospital
  • Knox Private Hospital
  • Melbourne Private Hospital
  • Monash Heart (Monash Health)
  • Northern Hospital
  • Peninsula Private Hospital
  • Royal Melbourne Hospital
  • St John of God Ballarat Hospital
  • St John of God Bendigo Hospital
  • St John of God Geelong Hospital
  • St Vincent's Private Hospital
  • St Vincent's Hospital (Melb)
  • Sunshine Hospital
  • The Valley Private Hospital
  • University Hospital, Geelong
  • Warringal Private Hospital
  • Western Private Hospital

Regional STEMI Hospital

  • Albury Wodonga Health (Albury Campus)
  • Albury Wodonga Health (Wodonga Campus)
  • Bendig Hospital
  • Central Gippsland Health Service (Sale)
  • Latrobe Regional Hospital (Traralgon)
  • Mildura Base Hospital
  • Northeast Health (Wangaratta)
  • West Gippsland Health Care Group (Warragul)
  • Wimmera Base Hospital (Horsham)

Heart Failure Hospital

  • Alfred Hospital
  • Austin Hospital
  • Bairnsdale Regional Health Service
  • Bendigo Hospital
  • Box Hill Hospital
  • Central Gippsland Health Service (Sale)
  • Dandenong Hospital (Monash Health)
  • Epworth Hospital Richmond
  • Footscray Hospital
  • Frankston Hospital
  • MonashHeart (Monash Health)
  • Northern Hospital
  • Royal Melbourne Hospital
  • St Vincent's Hospital (Melb)
  • Sunshine Hospital
  • University Hospital, Geelong
ACSQHC- ARCR-477

Nil

Liver and intestinal disease

Australia and New Zealand Liver and Intestinal Transplant Registry

ANZLITR

https://www3.anzltr.org/

Mandy Byrne, Austin Health, mandy.byrne@austin.org.au

1986

The Australia and New Zealand Liver and Intestinal Transplant Registry (ANZLITR) is a collaborative effort of the liver transplantation units in Australia (Adelaide, Brisbane, Melbourne, Perth, Sydney) and New Zealand (Auckland).

Purpose/aims: Collect, store, analyse and report on activity and outcomes using information about all liver and intestinal transplants across Australia and New Zealand. Support approved research projects wishing to utilise de-identified ANZLITR data.

Population: All participants that are wait-listed and those that receive a liver and/or intestinal transplant. All participants that are living liver donors (who donate a part of their liver).

Outcomes measures: Waiting list activity and transplantation activity are reported by various factors including:

  • Participant age, age group and age strata
  • Paediatric weight
  • Era of transplant (5 yearly groups)
  • Donor type (deceased/living)
  • Graft type (whole/split/reduced)
  • Graft number (participants may be retransplanted if the first graft fails)
  • Graft survival time
  • Primary disease
  • Indications for retransplantation (graft failure)
  • Causes of death 
  • Patient survival time
Austin Health Monash Health Ref: RES-19-0000612A   ERM Reference Number: 55535
  • Reported in Annual Report
  • Shared with clinicians
  • Shared with consumers
  • Clinicians have access to their own raw data
  • Data sent to Commonwealth Organ and Tissue Authority
Nil Nil
  • Australian National Liver Transplant Unit, Royal Prince Alfred Hospital
  • The Children's Hospital, Westmead
  • Victorian Liver Transplantation Unit, Austin Hospital
  • The Royal Children's Hospital, Melbourne
  • Queensland Children’s Hospital
  • Queensland Liver Transplant Service, Princess Alexandra Hospital
  • South Australian Liver Transplant Unit, Flinders Medical Centre
  • WA Liver Transplantation Service, Sir Charles Gairdner Hospital
  • New Zealand Liver Transplant Unit, Auckland City Hospital
  • Starship Children’s Hospital, Auckland, New Zealand