Prioritised clinical domain
High burden cancers
Abbreviation
ACCORD Head and Neck Tumour
Registry contact

David Wiesenfeld, Melbourne Health, David.Wiesenfeld@mh.org.au

Year established
2007
Description

Records presentation, treatment and outcomes for patients at Melbourne Health with Head and Neck Cancer

Reporting process
  • Reported in other public reports
  • Reported through internal Tumour Stream audits
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Melbourne Health

Condition
Head and Neck Cancer
Name
Australian Comprehensive Cancer Outcomes and Research Database  Head and Neck Tumour Database
Weblink

Nil

Lead organisation
Melbourne Health
Ethics approval reference
Melbourne Health HREC: 2005-198
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
MRDR
Registry contact

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

Year established
2012
Description

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.

Reporting process
  • 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
Patient Reported Outcome Measures (PROMs)

Collect EQ-5D-5L

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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

Australian Capital Territory

  • Canberra Hospital 

Victoria

  • The Alfred Hospital
  • Peninsula Health (Frankston)
  • Austin Hospital
  • Northern Health  (Northern Hospital)
  • The Royal Melbourne Hospital
  • Royal Melbourne /Peter Mac
  • Monash Health (MMC)
  • Cabrini - Malvern 
  • St Vincent's Hospital, Melbourne
  • Eastern Health (Box Hill)
  • Latrobe Regional Hospital
  • Bairnsdale Regional Health Service
  • Central Gippsland Health Service (Sale Hospital)
  • Epworth Freemasons Hospital
  • University Hospital Geelong

New South Wales

  • Royal Prince Alfred Hospital
  • St George Hospital
  • Concord Repatriation General Hospital
  • Lismore Hospital
  • Royal North Shore Hospital
  • Liverpool Hospital
  • St Vincent's Hospital, Sydney
  • Nepean Cancer Care
  • Border Medical Oncology
  • Jarrett St Specialist Centre
  • ICON Cancer Care

Queensland

  • Princess Alexandra Hospital
  • Royal Brisbane and Women's Hospital
  • Toowomba Hospital
  • Townsville Hospital

Northern Territory

  • Royal Darwin Hospital

Western Australia

  • Sir Charles Gairdner Hospital
  • Hollywood Private Hospital

South Australia

  • Flinders Medical Centre
  • Adelaide Cancer Centre

Tasmania 

  • Royal Hobart Hospital
  • Launceston Hospital

New Zealand 

  • Middlemore Hospital
  • Christchurch Hospital
  • Dunedin Hospital
  • Wellington Hospital 
  • Nelson Hospital 
  • Whangarei Hospital 
Condition
Multiple myeloma and related diseases
Name
Myeloma and related Diseases Registry
Weblink

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

Lead organisation
Monash University
Ethics approval reference
HREC/16/Alfred/126
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
VLCR
Registry contact

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

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

Year established
2011
Description

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.

Reporting process
  • 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 (PROMs)

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 (PREMs)

Patient Reported Experience Measures will be collected in 2020.

Participating sites

Victoria

  • 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)
Condition
Lung cancer
Name
Victorian Lung Cancer Registry
Weblink

https://vlcr.org.au

Lead organisation
Monash University
Ethics approval reference
HREC/16/Alfred/84
Program area
Indicators and measurement
Prioritised clinical domain
Ischemic heart disease
Abbreviation
ANZSCTS Database
Registry contact

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

Year established
2001
Description

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.

Reporting process
  • 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 
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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
Condition
Cardio thoracic surgery
Name
Australian and New Zealand Society of Cardiac and Thoracic Surgeons Database Program
Weblink

https://anzscts.org/database/

Lead organisation
Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS)
Ethics approval reference
262/09, Alfred Health Ethics Committee
Program area
Indicators and measurement
Prioritised clinical domain
Nil
Abbreviation
AAR
Registry contact

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

Year established
2012
Description

The Aplastic Anaemia Registry was established in 2012, through a collaboration between the Transfusion Research Unit in Monash University’s School of Public Health and Preventive Medicine and partner hospitals, clinicians and patients.

Registry operations are overseen by a multidisciplinary national steering committee and is supported by the Maddie Riewoldt’s Vision Foundation.

The Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry is a clinical quality registry (self-reported) collecting health information on adult and paediatric patients diagnosed with a bone marrow failure syndrome. Data collection is performed at baseline following diagnosis at 6-months and then annually and collects information on the following:

  • Health at diagnosis, patient demographics, co-morbidities and performance status
  • Clinical presentation and disease characteristics (disease type, severity and laboratory diagnostic data)
  • Therapy decisions, (drug/dose of treatment, number of lines of therapy, reasons for alteration or discontinuation)
  • Outcomes (such as complications of disease and therapies and survival).

There are currently 40 Australian hospitals participating in the registry with over 360 participants registered since the first patient data was entered in 2013. The registry provides research infrastructure for the DIAAMOND clinical trial, IBMDx study and the Australian Marrow Failure Biobank.

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

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • Calvary Mater Hospital Newcastle
  • Canberra Hospital
  • Children's Hospital at Westmead
  • Concord Hospital
  • Gosford Hospital
  • John Hunter Children's Hospital
  • Liverpool Hospital
  • Nepean Hospital
  • Prince of Wales Hospital
  • Royal North Shore
  • Royal Prince Alfred Hospital
  • St George Hospital
  • St Vincent's Hospital - Sydney
  • Sydney Children's Hospital
  • Westmead Hospital
  • Wollongong Hospital

Queensland

  • Princess Alexandra Hospital
  • Queensland Children's Hospital
  • Royal Brisbane and Women's Hospital
  • Townsville Hospital

South Australia

  • Flinders Medical Centre
  • Queen Elizabeth Hospital
  • Royal Adelaide Hospital
  • Women's and Children's Hospital Adelaide

Tasmania

  • Royal Hobart Hospital

Victoria

  • Alfred Hospital
  •  Austin Hospital
  •  Box Hill Hospital
  •  Geelong Hospital
  •  Monash Medical Centre
  • Peter MacCallum Cancer Centre
  •  Royal Children's Hospital Melbourne
  •  Royal Melbourne Hospital
  •  St Vincent's Hospital - Melbourne
  •  Western Hospital

Western Australia

  • Fiona Stanley Hospital
  • Perth Children's Hospital
  • Royal Perth Hospital
  • Sir Charles Gairdner Hospital
Condition
Acquired and Inherited Bone Marrow Failure Syndromes
Name
Aplastic Anaemia and other Bone Marrow Failure Syndromes Registry
Weblink

www.monash.edu/medicine/sphpm/registries/aar

https://aaregistry.org.au/

Lead organisation
Monash University
Ethics approval reference
NMA Lead HREC, Monash Health and Western Australia, Child and Adolescent Health Service HREC; HREC approval reference: CF12/0423 - 2012000185
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Nil
Abbreviation
AHDR
Registry contact

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

Year established
2017
Description

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.

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

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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
Condition
Congenital hand and upper limb differences
Name
Australian Hand Difference Register
Weblink

https://www.mcri.edu.au/ahdr

Lead organisation
Murdoch Children's Research Institute
Ethics approval reference
HREC/17/RCHM/4, The Royal Children’s Hospital HREC
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
ANZTCT
Registry contact

Leonie Wilcox, St Vincent's Hospital Sydney,leonie.wilcox@svha.org.au

Year established
1992
Description

The purpose of the ANZTCT is :

  • to collect baseline and outcome data relating to all bone marrow, peripheral blood and cord blood haemopoietic stem cell transplants and other cell therapies performed throughout Australia and New Zealand.
  • to provide data to clinicians and researchers for studies involving specific subsets of patients, or to determine the feasibility of such studies.
  • to provide data to clinicians to inform patient care.
  • to provide data to health administrators for resource planning and quality assurance purposes.
  • to participate in local and international data collections by contributing summary and outcome data to enhance the global knowledge base for these types of treatments.
  • to routinely provide systematic bench-marking data to contributing centres for safety and quality audits and to assist with accreditation requirements.
Reporting process
  • Feedback to contributing clinicians 
  • Shared with clinicians
  • Provide benchmarking analysis for safety and quality audits and to assist with accreditation requirements
Patient Reported Outcome Measures (PROMs)

To be collected initially for cell therapy patients, with potential to include transplant patients in the future

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

https://anztct.org.au/registry/contributing-centers/

New South Wales

  • Children's Hospital at Westmead
  • Concord Repatriation and General Hospital
  • Gosford Hospital
  • John Hunter Children's Hospital
  • Liverpool Hospital
  • Nepean Hospital
  • Newcastle Mater Hospital
  • Prince of Wales Hospital
  • Royal North Shore Hospital
  • Royal Prince Alfred Hospital
  • St George Hospital
  • St Vincent's Hospital, Sydney
  • Sydney Children's Hospital
  • Westmead Hospital
  • Wollongong Hospital

Queensland

  • Gold Coast University Hospital
  • Greenslopes Private Hospital
  • Mater Private Hospital
  • Mater Misericordae Public Hospital
  • Princess Alexandra Hospital
  • Queensland Children's Hospital
  • Royal Brisbane & Women's Hospital
  • The Townsville Hospital
  • Wesley Private Hospital

Victoria

  • Alfred Hospital
  • Austin Hospital
  • Box Hill Hospital
  • Geelong Hospital
  • Peter MacCallum Cancer Centre
  • Royal Children's Hospital, Melbourne
  • Royal Melbourne Hospital
  • St Vincent's Hospital, Melbourne

South Australia

  • Flinders Medical Centre
  • Queen Elizabeth Hospital
  • Royal Adelaide Hospital
  • Women and Children's Hospital

Western Australia

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

Tasmania

  • Royal Hobart Hospital 

Australian Capital Territory

  • Canberra Hospital

New Zealand

  • Auckland Hospital
  • Christchurch Hospital
  • Palmerston North Hospital
  • Starship Hospital
  • Waikato Hospital
  • Wellington Hospital
Condition
Transplant and cellular therapies
Name
Australia and New Zealand Transplant and Cellular Therapies Registry
Weblink

https://anztct.org.au/

 

Lead organisation
Australia and New Zealand Transplant and Cellular Therapies Limited (professional)/ St Vincent's Hospital Sydney (operational)
Ethics approval reference
St Vincent’s Hospital HREC: LNR/14/SVH/41
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
High burden cancers
Abbreviation
PCOR-Vic
Registry contact

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

Year established
2009
Description

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).

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

The Expanded Prostate Cancer Index Composite (EPIC-26), EORTC QLQ - PR25 and questions from the Utilization of Sexual Medications/devices questionnaire (Libido questions only)

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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

Victoria 

  • 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)
Condition
Prostate cancer
Name
Prostate Cancer Outcomes Registry - Victoria 
Weblink

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

Lead organisation
Monash University
Ethics approval reference
HREC/16/Alfred/98
Program area
Indicators and measurement
Prioritised clinical domain
Nil
Abbreviation
ABDR
Registry contact

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

Year established
2015
Description

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).

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

BREAST-Q Implant Surveillance module (BREAST-Q IS)

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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
Condition
Breast device surgery
Name
The Australian Breast Device Registry
Weblink

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

Lead organisation
Monash University
Ethics approval reference
Multiple HRECs, lead site is Alfred Hospital HREC 5/15 and Monash University
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
LaRDR
Registry contact

Transfusion Research Unit, Monash University, SPHPM-Lymphoma@monash.edu

Year established
2016
Description

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).
Reporting process
  • Feedback to contributing clinicians
  • Site specific report is given to each site that is participating
  • Shared with clinicians
  • Reported in Annual Report
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Australian Capital Territory 

  • Canberra Hospital

New South Wales

  • Coffs Harbour Health Campus
  • Concord Hospital
  • Gosford Hospital
  • Liverpool Hospital
  • Port Macquarie Base Hospital
  • Prince of Wales Hospital
  • Royal North Shore Hospital
  • St Vincent's Hospital Sydney

Northern Territory

  • Royal Darwin Hospital

Queensland

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

South Australia

  • Flinders Medical Centre
  • Royal Adelaide Hospital

Tasmania

  • Royal Hobart Hospital

Victoria

  • The Alfred
  • Austin Health
  • Barwon Health
  • Box Hill Hospital
  • Cabrini Health
  • Epworth Hospital
  • Grampians Health
  • Monash Medical Centre
  • Northern Hospital
  • Peter MacCallum Cancer Centre
  • St Vincent's Hospital Melbourne
  • Western Health

Western Australia

  • Fiona Stanley Hospital
  • Rockingham General Hospital
  • Royal Perth Hospital
  • Sir Charles Gairdner Hospital

New Zealand

  • Auckland City Hospital
  • Christchurch Hospital
Condition
Lymphoma and related diseases
Name
Lymphoma and related Diseases Registry
Weblink

https://lardr.org

Lead organisation
Monash University
Ethics approval reference
16213A/Monash Health HREC
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Nil
Abbreviation
HbR
Registry contact

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

Year established
2014
Description

The Haemoglobinopathy Registry collects data about patients with genetic disorders of haemoglobin (haemoglobinopathies), including thalassaemias and sickle cell disease.   Many of these patients are dependent on regular blood transfusions and the disorders can have significant personal and economic impact. Lack of data on the prevalence of haemoglobinopathies and the overall disease burden in Australia makes comparisons of interventions and audits of outcomes between centres nationally and with international centres, difficult.   The Haemoglobinopathy Registry will address this lack of data, and will provide a foundation for future research. The aims of the Haemoglobinopathy Registry are to:

  • monitor trends in incidence and survival
  • monitor access to care
  • explore variation in practice, process and outcome measures
  • explore the factors that influence outcomes including survival and quality of life
  • benchmark outcomes nationally and internationally
  • act as a resource for clinical trials
  • inform and inspire future hypothesis - driven research in this area
Reporting process

Reporting via research publications only

Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • The Children's Hospital at Westmead
  • John Hunter Children's Hospital
  • Liverpool Hospital 
  • Prince of Wales Hospital
  • Royal Prince Alfred Hospital

Queensland

  • Mater Adult Hospital 
  • Queensland Children's Hospital

South Australia

  • Royal Adelaide Hospital
  • Women's and Children's Hospital

Victoria

  • Monash Medical Centre
  • Royal Children's Hospital 
  • Royal Melbourne Hospital

Western Australia

  • Perth Children's Hospital
Condition
Genetic disorders of haemoglobin (haemoglobinopathies)
Name
Haemoglobinopathy Registry
Weblink

https://www.monash.edu/medicine/sphpm/registries/hbr

Lead organisation
Monash University
Ethics approval reference
HREC/16/MonH/156, Monash Health HREC
Program area
Indicators and measurement
Preferred published date
Immediately
Prioritised clinical domain
Musculoskeletal disorders
Abbreviation
ANZHFR
Registry contact

Elizabeth Armstrong, Neuroscience Research Australia, e.armstrong@neura.edu.au

Year established
2015
Description

The purpose of the ANZHFR is to use data to improve care and maximise outcomes for older people who have broken their hip. Public and private hospitals providing definitive treatment to people with a hip fracture are eligible to participate in the ANZHFR. People aged 50 years and over admitted to a participating Australian or New Zealand hospital are eligible for inclusion in the Registry.

The ANZHFR evaluates hospital care against the ACSQHC Hip Fracture Care Clinical Care Standard to identify variation in key aspects of care and clinical outcomes. The Registry feeds the evaluation back to the health system, and the clinicians who work in the system, to inform clinical practice and decision making. The aim of the Registry is to improve the quality and safety of hip fracture with the objective of maximising a person’s survival and functional independence after hip fracture. The ANZHFR measures and reports against the quality statements and their indicators.

Reporting process

ANZHFR incorporates feedback via a real-time data dashboard and audit reports, which allows the data held by the Registry to be translated into meaningful reporting for clinicians, executive and local quality and safety staff. Meaningful reports can be generated onsite by registry users removing the need to request reports from the central Registry.

The ANZHFR generates participating-site annual report and an Australian State and Territory report. These are publicly available via the website and shared with clinicians, hospital executive, state/territory/national health departments and authorities, as well as consumer and clinician stakeholder groups, on release. Individual hospitals opt-in to identified reporting and in 2020, 95% of hospitals have opted-in.

Patient Reported Outcome Measures (PROMs)

EQ5D5L optional collection at 120 days after admission

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • Armidale Hospital
  • Bankstown-Lidcombe Hospital
  • Blacktown Hospital
  • Bowral Hospital
  • Campbelltown Hospital 
  • Coffs Harbour Hospital 
  • Concord Hospital 
  • Dubbo Hospital 
  • Gosford Hospital 
  • Grafton Base Hospital 
  • Hornsby Ku-ring-gai Hospital 
  • John Hunter Hospital 
  • Lismore Base Hospital 
  • Liverpool Hospital 
  • Nepean Hospital 
  • Orange Health Service
  • Port Macquarie Hospital 
  • Prince of Wales Hospital 
  • Royal North Shore Hospital 
  • Royal Prince Alfred Hospital 
  • Ryde Hospital 
  • Shoalhaven Hospital 
  • St George Hospital 
  • St Vincent's Hospital Darlinghurst
  • Sutherland Hospital 
  • Tweed Heads Hospital
  • Wagga Wagga Hospital  
  • Westmead Hospital 
  • Wollongong Hospital 

Victoria

  • Box Hill Hospital
  • Dandenong Hospital Campus
  • Footscray Hospital 
  • Frankston Hospital 
  • Geelong Hospital 
  • Maroondah Hospital 
  • Mt Gambier Hospital 
  • Sandringham Hospital 
  • St Vincent's Hospital Melbourne
  • The Alfred Hospital 
  • The Austin Hospital
  • The Northern Hospital 

Tasmania

  • North West Regional Hospital 
  • Launceston Hospital 
  • Royal Hobart Hospital 

Queensland

  • Cairns Hospital
  • Gold Coast Hospital 
  • Hervey Bay Hospital 
  • Ipswich Hospital 
  • Logan Hospital
  • Mackay base Hospital 
  • Mater Hospital, South Brisbane
  • Nambour Hospital 
  • Princess Alexandra Hospital 
  • Queen Elizabeth II Jubilee Hospital 
  • Redcliffe Hospital 
  • Robina Hospital 
  • Rockhampton Hospital 
  • Sunshine Coast University Hospital 
  • Tamworth Hospital 
  • The Prince Charles Hospital 
  • Toowoomba Hospital 
  • Townsville Hospital 
  • Wesley Hospital, Brisbane

South Australia

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

Western Australia

  • Albany Hospital 
  • Fiona Stanley Hospital
  • Joondalup Hospital 
  • Royal Perth Hospital 
  • Sir Charles Gairdner Hospital 
Condition
Hip fracture
Name
Australian and New Zealand Hip Fracture Registry
Weblink

www.anzhfr.org

Lead organisation
Neuroscience Research Australia
Ethics approval reference
The Prince Charles Hospital HREC: HREC/14/QPCH/54
NSW Population and Health Services Research HREC: HREC/14/CIPHS/51
Monash HREC: HREC/16/MONH/65
HREC of Tasmania: 2014-043
Central Adelaide Local Health Network HREC: HREC/14/RAH/115
Sir Charles Gairdner and Osborne Park Health Care Group HREC: H0015534/H0017654
Program area
Indicators and measurement
Prioritised clinical domain
Nil
Abbreviation
SSR
Registry contact

Professor Mark Gillies, Sydney Eye Hospital and the University of Sydney, ssi.ssr@sydney.edu.au

Year established
2010
Description

The Save Sight Registries (SSR) System is a unique online platform designed to track and document real-world outcomes for the treatment of eye diseases through the collection, exchange and analysis of de-identified health data. The international SSR flagship project is the Fight Retinal Blindness! Registry, established in Australia in 2007. Through its research activities, SSR enables current and emerging therapies to be evaluated for patient safety, clinical efficacy and cost-effectiveness. Our reports are read by clinicians, researchers, policy makers, public health administrators and patient advocacy organisations seeking to improve health outcomes for patients with a range of eye conditions. In Australia, the SSR system has been successfully implemented in the private and public sector health care systems in all state and territories. Additionally, SSR has also expanded to other countries including New Zealand, Switzerland, Singapore, Belgium, France, Ireland, Italy, Spain, the Netherlands and the United Kingdom. 

The primary objectives of SSR are three-fold:

  • to provide a secure, web-based platform for clinicians to document high-quality clinical data on patient treatments outcomes
  • to generate clinician specific analytics and reports for self-auditing
  • to improve patient care through the establishment of benchmark standards of care for specific ocular conditions that can be treated with available and emerging treatments.

Patient population: Patients being treated for eye diseases including diabetic retinopathy, keratoconus, glaucoma, and ocular melanoma.

Outcomes measured: Visual acuity and treatment burden are two key indicators for the assessment of the efficacy of treatment, therapies and surgical interventions.

Reporting process
  • Reported in other public reports
  • Shared with clinicians
  • Shared with consumers
  • Commissioned reports and academic papers presented at scientific conferences and published in peer review journals.
  • FRB! system provides automated reports whereby doctors can ascertain their performance against the aggregated cohort, SSR does not provide feedback about treatment regimens to individual clinicians
  • Impact of Vision Impairment (IVI) Questionnaire
Patient Reported Outcome Measures (PROMs)
  • Keratoconus Outcomes Research Questionnaire (KORQ)
  • Glaucoma Activity Limitation Questionnaire
  • Glaucoma Ocular Surface Disease Index Questionnaire
Patient Reported Experience Measures (PREMs)

Nil

Participating sites

For the sake of privacy of participating clinicians, we cannot provide a comprehensive list of participating sites. However, hospitals include:

  • Sydney Eye Hospital, Australia
  • Universitats Spital Zurich, Switzerland
  • ADHB Auckland Hospital, New Zealand
  • CHU de Dijon, France
  • Hospital Clínic de Barcelona, Spain
  • Amphia Ziekenhuis, Breda, The Netherlands
  • Royal Free London NHS Foundation Trust, UK
  • Fondazione IRCCS CA'GRANDA - Ospedale Maggiore Policlinico, Italy
  • Singapore National Eye Centre, Singapore
Condition
Clinical ophthalmology
Name
Save Sight Registries
Weblink

http://savesightregistries.org/

Lead organisation
University of Sydney
Ethics approval reference
Royal Australian and New Zealand College of Ophthalmologists HREC: 16.09 (09/73), 49.14, 50.14,102.19
South Eastern Sydney Local Health District HREC: 13/037,14/024
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
SA-PCCOC
Registry contact

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

Year established
1998
Description

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.

Reporting process
  • Feedback to contributing clinicians
  • Shared with clinicians
  • Annual report
Patient Reported Outcome Measures (PROMs)
  • 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.
Patient Reported Experience Measures (PREMs)

EPIC-26, IPSS, plus demographics

Participating sites
  • 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
Condition
Prostate Cancer
Name
South Australian Prostate Cancer Clinical Outcomes Collaborative
Weblink

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

Lead organisation
Flinders Medical Centre
Ethics approval reference
307.14; Southern Adelaide Clinical HREC
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
ANZTCR
Registry contact

Dr Liane Ioannou, Monash University, anztcr@monash.edu

Year established
2017
Description

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).

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

Not yet collecting PROMs but is planning to in the future

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

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

  • Metro South Health (Radlan Hospital, Logan Hospital)
  • North West Private Hospital
  • Greenslopes Private Hospital
  • Townsville Hospital
  • The Wesley Hospital Brisbane 
Condition
Thyroid Cancer
Name
Australian and New Zealand Thyroid Cancer Registry
Weblink

www.anztcr.org.au

Lead organisation
Monash University
Ethics approval reference
HREC/16/Alfred/61
Program area
Indicators and measurement
Prioritised clinical domain
Nil
Abbreviation
WSIH Patient Registry
Registry contact

Suzanne Grant,NICM Health Research Institute, Western Sydney University, S.Grant@westernsydney.edu.au

Year established
2020
Description

The evaluation of WSIH is an ongoing, prospective observational study of patients attending WSIH and the practitioners and staff that care for them. Data collected will contribute to a patient registry, which will store data and enable observation of patient reported outcomes (PROs).

Developed and managed by Western Sydney University, the WSIH Patient Registry is the first nationwide database of its kind, and will be used to evaluate patient-reported outcomes (PROs) over time, such as quality of life, pain, mood, and stress, for patients who supplement conventional healthcare with therapies such as acupuncture, yoga, and mindfulness. This registry will perform prospective surveillance of participants attending the WSIH centre for clinical services.  The registry combines de-identified patient-reported data with information from the Electronic Health Records documenting patient visit details, procedures offered, diagnosis, and patient pain-assessment score, as well as linkage with health information from Commonwealth administrative and other external datasets.

The WSIH Patient Registry will evaluate whether PROs differ with the frequency and duration of each particular intervention, while also tracking variables based on multiple characteristics of the participants, such as age, gender, ethnicity, race, and clinical condition. Essential data elements that capture PROs (based on patient response to questionnaires) and measures of clinical activity will be obtained comparing their baseline with results at 3, 6, 12, 18 and 24 months.

Reporting process

The following are planned:

  • Reported in Annual Report
  • Reported in other public reports
  • Shared with other clinicians
  • Shared with consumers
  • Shared with medical colleges
  • Summaries of results will be made available to investigators for dissemination within their clinics (where appropriate and according to discretion).
  • De-identified and summated reports will be available to all stakeholders (including clinicians working at WSIH) and patients attending WSIH on which other written and oral presentations will be based.
  • Future sharing may also include sharing the information and/or reports with other researchers and collaborators. Initially, third-party disclosure will not apply, and in the future, any third parties wishing to access data and publish findings must seek approval from the WSIH Data Governance Steering Committee and obtain relevant Institutional Ethics Committee endorsement where identified or re-identifiable data is sought.
Patient Reported Outcome Measures (PROMs)

It is intended that the following PROMs will be collected:

  • MYCAW
  • PROMIS-29
  • Perceived Stress Scale-4 (PSS-4)Work Productivity and Activity Impairment (WPAI) questionnaire
  • Adverse events

Condition-specific PROMs as follows:

  • Brief Fatigue Inventory
  • Godin Leisure Time Questionnaire
  • Pittsburgh Sleep Quality Index
  • Generalised Anxiety Disorder Scale (GAD-2)
  • Depression and Anxiety Stress Scale (DASS-21)
  • PROMIS Adult Short Forms (cover a range of symptoms and enable measurement of these to establish progress in treatment from baseline)
  • Brief Pain Inventory (BPI)
  • Pain Self-Efficacy Questionnaire (PSEQ)
  • Pain Catastrophising Scale (PCS)
  • Edmonton Symptom Assessment Scale (ESAS)
  • Xerostomia Inventory
  • Hamilton Anxiety and Depression Scale (HADS)
  • Berkman-Syme Social Network Index (SNI)
  • Functional Assessment of Cancer Therapy - General
  • MD Anderson Symptom Inventory (MDASI) Core Items
  • PAID Scale (Diabetes)
  • Western Ontario and McMasters Osteoarthritis Index (WOMAC)
Patient Reported Experience Measures (PREMs)

It is intended that the following PREMs will be collected:

  • Patient satisfaction survey
  • Health Education Impact Questionnaire (HeiQ)
  • Patient Assessment of Chronic Illness Care (13-item version)
  • Care Coordination Quality Measure for Primary Care (CCQM-PC)
Participating sites

Western Sydney Integrative Health

Condition
Integrative healthcare treatment (blending of evidence-informed complementary medicine therapies with conventional healthcare)
Name
Western Sydney Integrative Health (WSIH) Patient Registry
Pending, not operational at time of publication
Weblink

https://www.westernsydney.edu.au/nicm/western_sydney_integrative_health

Lead organisation
Western Sydney University
Ethics approval reference
Western Sydney University HREC: H13419
Program area
Indicators and measurement
Prioritised clinical domain
High burden cancers
Abbreviation
TNGR
Registry contact

Jacinta Opie and Fanny Sampurno, Monash University, pco_dcc@monash.edu

Year established
2017
Description

The TrueNTH Global Registry is an international project funded by the Movember Foundation. The aim of this registry is to significantly improve quality of care and the attendant patient‐centred outcomes in men with localised prostate cancer globally. The specific objective is to leverage existing infrastructures and relationships to build success and experience within the assembled registry team. The registry involves the collection of prospectively‐collected dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised prostate cancer.

Reporting process
  • Shared with principal investigators from each participating countries
  • Feedback to contributing clinicians
Patient Reported Outcome Measures (PROMs)

The EPIC‐26, the EORTC QLQ‐PR25, the Utilisation of Sexual Medications/Devices questions taken from a paper by Miller et al.

Patient Reported Experience Measures (PREMs)

Nil

Participating sites
  • Australian Urology Associates in Melbourne Australia
  • Garvan Institute of Medical Research in NSW Australia
  • Australian Prostate Cancer Research Centre - Queensland, QUT for the South East Queensland Consortium of Participating Sites
  • Centre for Health Outcome Measures New Zealand
  • MedUniWien in Austria
  • Princess Margaret Cancer Centre in Canada
  • Thomayer Hospital in Prague
  • German Cancer Society in Berlin
  • Molecular Medicine Ireland in Dublin
  • Prince of Wales Hospital in Hong Kong
  • University of Naples Federico II in Naples
  • Fondazione IRCCS Istituto Nazionale dei Tumori and IRCCS Ospedale San Raffaele in Milan
  • Santeon in Utrecht
  • Cancer Registry of Norway
  • IMIM (Hospital del Mar Research Institute) in Barcelona
  • University of Southampton in Southampton (UK)
  • University of Michigan in Ann Arbor
  • University of California Los Angeles (UCLA) Urology
  • Vanderbilt University Medical Center in Nashville (Tennessee)
  • Sloan Kettering Institute for Cancer Research in New York
Condition
Prostate cancer
Name
TrueNTH Global Registry - Prostate Cancer Outcomes
Weblink

Nil

Lead organisation
Monash University
Ethics approval reference
HREC/16/Alfred/98
Program area
Indicators and measurement
Prioritised clinical domain
Ischemic heart disease
Abbreviation
CADOSA
Registry contact

Rosanna Tavella, The University of Adelaide, and Central Adelaide Local Health Network, SA Health, rosanna.tavella@adelaide.edu.au

Year established
2012
Description

The Coronary Angiogram Database of South Australia (CADOSA) Registry was established to provide a comprehensive data infrastructure of invasive coronary procedures in order to evaluate the delivery of quality health care thereby facilitating clinical improvement and supporting clinical coronary research.

Established in 2012, the Registry now contains over 45,000 records, representative of public and private hospital clinical practice in the management of coronary artery disease. This unique Registry has attracted both national and international acclaim and continues to pioneer new innovations in clinical registry structure and function.

Key Components: 

Quality Assurance Module contains baseline clinical, angiographic, procedural and discharge data for patients undergoing invasive diagnostic angiography with/without percutaneous coronary interventions (all consecutive in the South Australian public hospital are captured). Linkage with administrative datasets also enables the capture of future cardiovascular outcomes such as readmission to hospital and mortality. This data collection is compatible with the American College of Cardiology National Cardiovascular Data Registry (NCDR®), specifically the CathPCI Registry®.

Health Outcome Module contains baseline, 1 and 12-month patient-reported outcome measures (PROMs) including symptomatic status, disease-associated physical impairment, quality of life, and depression. Evaluating these patient-related outcomes provides key insights into the effectiveness of clinical therapies and underscores the most aspect of healthcare delivery – our patients. The CADOSA PROMs collection is endorsed by ICHOM (International Consortium of Health Outcomes Measurement) as it captures the recommended standard data set for coronary artery disease.

Reporting process
  • Feedback to contributing clinicians in the format of hospital-level or statewide reports. Clinical level reporting is not produced.
  • Reported in Annual Report
  • Shared with other clinicians
  • Shared with hospital executive
  • Shared with medical colleges
  • Reported to State/Territory health departments in the format of statewide reports
Patient Reported Outcome Measures (PROMs)

The CADOSA Registry collects PROMs at baseline, and at 1 month and 12 month post discharge (via phone interview). The questionnaires administered include the Seattle Angina Questionnaire (SAQ), the ROSE Dyspnea Scale, the Euro-Qol 5D and the Patient Health Questionnaire (PHQ-9) for depression. The CADOSA PROMs module is compatible with the ICHOM Standard Set for Coronary Artery Disease.

Patient Reported Experience Measures (PREMs)

Nil

Participating sites
  • The Royal Adelaide Hospital 
  • The Queen Elizabeth Hospital
  • Lyell McEwin Hospital
  • Flinders Medical Centre
  • Calvary Adelaide
Condition
Coronary Angiography (diagnostic)
Coronary angioplasty/stenting - percutaenous coronary intervention (interventional)
Name
Coronary Angiogram Database of South Australia
Weblink

http://www.cadosa.org

Lead organisation
The University of Adelaide
Ethics approval reference
Central Adelaide Local Health Network HREC: HREC/15/TQEH/252
Program area
Indicators and measurement
Prioritised clinical domain
Major burns
Abbreviation
BRANZ
Registry contact

Lincoln Tracy, Monash University, anzba.registry@monash.edu

Year established
2009
Description

The Burns Registry of Australia and New Zealand is a clinical quality registry capturing epidemiological, quality of care, and outcome data for adult and paediatric burn patients across Australian and New Zealand burn units. The purpose of the registry is to monitor burn injury incidence and causation, identify objective and verifiable evidence-based information on treatment, outcomes, and quality of care to encourage higher standards of both burn injury prevention and patient care.

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

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

https://www.monash.edu/medicine/sphpm/branz/about  

Queensland

  • Royal Brisbane & Women's Hospital 
  • Lady Cilento Children's Hospital

New South Wales

  • Children's Hospital at Westmead
  • Concord Repatriation General Hospital
  • Royal North Shore Hospital

Victoria

  • The Alfred
  • Royal Children's Hospital

Tasmania

  • Royal Hobart Hospital

South Australia

  • Royal Adelaide Hosptial
  • Women's & Children's Hospital

Western Australia

  • Fiona Stanley Hospital
  • Perth Children's Hospital 

Northern Territory

  • Royal Darwin Hospital 

New Zealand

  • Christchurch Hospital 
  • Hutt Hospital 
  • Waikato Hospital
  • Middlemore Hospital 
Condition
Burns injuries
Name
Burns Registry of Australia and New Zealand
Weblink

https://www.monash.edu/medicine/sphpm/branz

Lead organisation
Monash University
Ethics approval reference
CF08/2431 - 2008001248, Monash University HREC
Program area
Indicators and measurement
Prioritised clinical domain
Adult critical care
Abbreviation
ANZCOTR
Registry contact

Ross Pettersson, St Vincents Hospital, Sydney, ross.pettersson@svha.org.au

Year established
1990
Description

The registry contains an agreed set of data variables from every heart and lung operation performed in the six facilities in Australia and New Zealand since 1984, and is ongoing.

The aim is to track defined variables to determine their effect on survival outcomes for patients and to provide statistical information on the numbers and types of these procedures being performed over time.

Reporting process
  • Feedback to clinicians
  • Feedback to states and territories (via annual report or specific statistical only data requests)
  • Reported in Annual Report
  • Reported in other public reports
  • Shared with clinicians
  • Shared with consumers
  • Reports to Organ and Tissue Authority
Patient Reported Outcome Measures (PROMs)

Nil

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

Victoria

  • The Alfred, Melbourne
  • Royal Children's, Melbourne

Western Australia

  • Fiona Stanley, Perth

Queensland

  • Prince Charles, Brisbane

New South Wales

  • St Vincents, Sydney

New Zealand

  • Auckland City Hospital, New Zealand
Condition
Heart and Lung transplantation
Name
Australian and New Zealand Cardiothoracic Organ Transplant Registry
Weblink

www.anzcotr.org.au

Lead organisation
Australian and New Zealand Cardiothoracic Organ Transplant Registry
Ethics approval reference
St Vincent's Sydney HREC: H03/009
Program area
Indicators and measurement
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