Australian Register of Clinical Registries
The Commission has developed the Australian Register of Clinical Registries (the Register) to facilitate collaboration and awareness of registry activity among key stakeholders.
The Register provides summary information on the purpose and organisation of clinical registries at all stages of development. The Register is voluntary and contains a list of clinical registries that have self-nominated to be published on the Register.
Clinical registries will be added to this list as the content of each registered clinical registry is curated and prepared for publishing. Registry custodians are requested to notify the Commission when registry details change. These changes will then be updated on the Register.
For clarification, the registration process does not include approval or endorsement by the Commission that the clinical registry is a clinical quality registry.
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 | Condition | Prioritised clinical domain | 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-005 | Blood transfusion | Nil | Australian and New Zealand Massive Transfusion Registry | 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 |
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Nil |
Nil |
Victoria
New South Wales
Queensland
South Australia
Western Australia
Tasmania
New Zealand
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| ACSQHC-ARCR-006 | Rehabilitation | Nil | Australasian Rehabilitation Outcomes Centre | AROC | AROC Director, Australian Health Services Research Institute, University of Wollongong, aroc@uow.edu.au |
2002 | AROC is the rehabilitation integrated clinical outcomes and benchmarking centre for Australia and New Zealand. AROC operates in the inpatient and ambulatory settings and includes both adult and paediatric rehabilitation sectors. Coverage in the inpatient adult rehabilitation sector is almost 100%, with 289 services participating in data collection and benchmarking. A growing number of adult ambulatory rehabilitation services are also participating. All specialist paediatric rehabilitation services are participating in both the paediatric inpatient and ambulatory benchmarking initiatives. The primary purpose of AROC is to facilitate improvement in the quality of rehabilitation and thus patient outcomes achieved. Each member of AROC collects the appropriate defined AROC dataset for each and every episode of rehabilitation care provided. The datasets include demographic, clinical, process and outcome data items. AROC receives data describing almost 150,000 episodes of rehabilitation each year. The longitudinal database currently contains 1.5 million records and is thus a rich resource that forms a spine of rehabilitation data available to underpin research in the sector. Members of AROC receive a suite of benchmarking reports each six months, comparing the outcomes they achieve with the national data. AROC also holds regular quality forums/benchmarking workshops to present data at service level and facilitate the identification and uptake of best practice processes. As well as publishing an Annual Report describing the state of rehabilitation in each country, AROC provides a range of resources for members including decision support tools and best practice case studies. |
Australian Health Services Research Institute | The University of Wollongong and Illawarra and Shoalhaven Local Health District Health and Medical (#HREC 2019/ETH13154) |
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Planning is underway to introduce a new range of PROMs in future versions of the data collection. A pilot is currently underway. |
The AM-CCRQ is an optional rehabilitation specific patient experience survey that is available for members. |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
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| ACSQHC-ARCR-012 | Chronic pain | Nil | electronic Persistent Pain Outcomes Collaboration | ePPOC | Hilarie Tardif, Australian Health Services Research Institute, University of Wollongong, eppoc-uow@uow.edu.au |
2013 | ePPOC is an integrated outcome centre which aims to improve the quality of outcomes and services for people experiencing chronic pain. It is an initiative of the Faculty of Pain Medicine, and was established in 2013 with funding from the NSW Ministry of Health. There are 90 specialist adult and paediatric pain management services participating in ePPOC, across Australia and New Zealand. The purpose and aims of ePPOC are to:
ePPOC receives data describing over 32,000 patients attending chronic pain clinics each year. The longitudinal database currently contains over 100,000 patients. For adult services, nine benchmarks and one indicator have been endorsed for pain management services to strive to achieve. These cover the following domains: pain and interference, depression, anxiety, stress, pain self-efficacy, pain catastrophising, opioid use and waiting time for treatment. For paediatric services, there is currently one benchmark and three indicators, covering waiting time for treatment, pain, quality of life and functional disability. |
Australian Health Services Research Institute (AHSRI) | The University of Wollongong and Illawarra and Shoalhaven Local Health District Health and Medical HREC Reference 018/052 |
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Adults: Brief Pain Inventory; Depression, Anxiety Stress Scale; Pain Catastrophising Scale; Pain Self-Efficacy Questionnaire; Work Productivity and Activity Impairment Questionnaire; Global Rating of Change scale; CARRA Body Chart. Paediatrics: Modified Brief Pain Inventory; Faces Pain Scale - Revised; Paediatric Quality of Life Inventory; Bath Adolescent Pain Questionnaire – Pain-related worry section; Bath Adolescent Pain – Parent Impact Questionnaire; Work Productivity and Impairment; CARRA Body Chart. |
Nil |
https://www.uow.edu.au/ahsri/eppoc/about/ New South Wales
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
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| ACSQHC-ARCR-015 | Severe Asthma | Nil | Australian Benralizumab Registry | ABenRA | https://www.thoracic.org.au/researchawards/australasian-severe-asthma-registry-asar |
Peter Gibson, Hunter Medical Research Institute, peter.gibson@newcastle.edu.au,asar@thoracic.org.au |
2019 | The Australian Benralizumab Registry (the ABenRA) collects and reports on data from people with severe refractory eosinophilic asthma who receive benralizumab:
The ABenRA provides a mechanism for sharing information which will help researchers and clinicians to better understand the use, efficacy, and safety associated with the treatment of severe asthma with benralizumab. The aim of the registry is to assess the change in patient reported asthma related symptoms after enrolment in the benralizumab registry following initiation of benralizumab in a real-world setting in the full study population and pre-specified subgroups. |
The Thoracic Society of Australia and New Zealand (TSANZ) | Ethics approval received from Hunter New England HREC:2019/ETH08669 |
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Nil |
https://www.thoracic.org.au/researchawards/asar-sites New South Wales
Western Australia
Victoria
Queensland
South Australia
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| ACSQHC-ARCR-017 | Severe Asthma | Nil | Australasian Severe Asthma Registry | ASAR | https://www.thoracic.org.au/researchawards/australasian-severe-asthma-registry-asar |
Peter Gibson, University of Newcastle, peter.gibson@newcastle.edu.au, asar@thoracic.org.au |
2019 | The Australasian Severe Asthma Network (ASAN) is a multicentre clinical research network that:
The ASAN provides a mechanism for sharing information which helps researchers and clinicians to better understand severe asthma and develop optimised clinical management strategies. The ASAN collects data relating to patients who are diagnosed with Severe Refractory Asthma (SA) and who are recruited from participating sites across Australia, Singapore, and New Zealand. All information collected from affiliate sites are securely stored in the main data repository. Access to the database is restricted to authorised users. |
The Thoracic Society of Australia and New Zealand (TSANZ) | Hunter New England HREC Reference No: 12/11/21/4.04; NSW REGIS Reference No: 2019/ETH03836 |
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Nil |
https://www.thoracic.org.au/researchawards/asar-sites Victoria
New South Wales
Western Australia
Queensland
South Australia
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| ACSQHC-ARCR-034 | Thrombotic Microangiopathies including TTP and HUS | Nil | Thrombotic Microangiopathies (TMA) Registry | TMA Registry | Dr Shiyang (Shayna) Jia, Transfusion Research Unit, Monash University, tmaregistry@monash.edu |
2008 | Thrombotic Microangiopathies (TMAs) are characterised by platelet aggregation within small blood vessels. This consumes platelets (causing thrombocytopenia), and the damaged/narrowed vessels cause mechanical destruction of red blood cells (microangiopathic haemolytic anaemia). The consequent disruption to blood flow within small vessels leads to end organ damage/dysfunction (e.g. kidney failure or stroke). Thrombotic microangiopathies can occur as a result of a variety of inherited and acquired conditions, and are now seen (and recognised) more commonly, particularly as they can occur as a result of new medications, such as some of the newer anti-cancer agents. Thrombotic thrombocytopenic purpura (TTP) is long recognised as a TMA affecting primarily the central nervous system and kidneys. TTP is a rare, life threatening disorder that had an almost universally fatal outcome till the introduction of plasmapheresis in the late 1980s and early 1990s. Haemolytic Uraemic Syndrome (HUS) is another rare TMA often preceded by a diarrhoeal illness caused by Shiga toxin-producing organisms (especially Escherichia coli (STEC) or Shigella bacteria). Atypical HUS (aHUS) has been used to encompass a group of TMAs that are neither TTP or HUS, and which are most commonly associated with acquired or inherited defects in the complement pathway or complement regulatory proteins. The relative rarity of the individual types of TMA is a barrier to accrual of data and material to support scientific studies and randomised clinical trials. A national registry for all Australian patients with TMA provides an important community resource. The aims of the TMA Registry are to:
The TMA Registry is a register of patients who develop TTP or HUS in any clinical setting. Clinical data collection is undertaken by clinicians in specialist units at participating hospitals. Data management and analysis is undertaken by the Department of Epidemiology and Preventive Medicine (DEPM), Monash University and interpreted with the input of specialist clinicians on the steering committee. |
Monash University | Monash University HREC: CF08/1674 - 2008000856 |
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Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
Other
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| ACSQHC-ARCR-037 | Upper Gastrointestinal Cancer Registry – Oesophagogastric Module | Nil | UGICR – Oesophagogastric Module | Oesophagogastric Cancer | Elysia Greenhill, Monash University, ugicr@monash.edu |
2015 | The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The oesophagogastric module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the oesophagus and stomach, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals. |
Monash University | National Mutual Acceptance, Monash Health HREC: Reference 15482A Aboriginal Health and Medical Research Council of New South Wales HREC: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611 |
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PROMs is a future endeavour of this module. |
PREMs is a future endeavour of this module. |
Victoria
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| ACSQHC-ARCR-044 | Bone and soft tissue tumours | High burden cancers | 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 |
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Nil |
Nil |
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| ACSQHC-ARCR-048 | Heart and Lung transplantation | Adult critical care | Australian and New Zealand Cardiothoracic Organ Transplant Registry | ANZCOTR | Ross Pettersson, St Vincents Hospital, Sydney, ross.pettersson@svha.org.au |
1990 | 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. |
Australian and New Zealand Cardiothoracic Organ Transplant Registry | St Vincent's Sydney HREC: H03/009 |
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Nil |
Nil |
Victoria
Western Australia
Queensland
New South Wales
New Zealand
|
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| ACSQHC-ARCR-061 | Neural tube defects and sacral agenesis | Nil | Victorian Neural Tube Defects Register | VNTDR | Catherine Marraffa, Royal Children's Hospital, Murdoch Children's Research Institute, catherine.marraffa@rch.org.au |
2015 | This registry was set up in 2015. The aim was to establish a longitudinal clinical registry with initial retrospective ascertainment of cases for the preceding 22 years (1993 to 2015) and ongoing prospective ascertainment of all children with a Neural Tube Defect (NTD) or Sacral Agenesis (SA) who attend the Spina Bifida/Neural Tube Defect clinic at The Royal Children’s Hospital, Melbourne. It is hoped the other site in Victoria caring for children with this condition, (Monash Children's Hospital) will join the registry and then the rest of Australia in order to determine current practices ,therapies with the hope that longitudinal outcomes may inform future practice. |
Murdoch Children's Research Institute | Royal Childrens Hospital HREC Reference: 35122A |
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Nil |
Nil |
Victoria
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| ACSQHC-ARCR-067 | Anaesthetics | Nil | Queensland Perioperative and Periprocedural Anaesthetic Mortality Review Committee | QPPAMRC | Karen Hamilton, Healthcare Improvement Unit, Clinical Excellence Queensland, QPPAMRC@health.qld.gov.au |
2012 | The Queensland Perioperative and Periprocedural Anaesthetic Mortality Review Committee (QPPAMRC) is a gazetted Quality Assurance Committee pursuant to Part 6, Division 1 of the Hospital and Health Boards Act 2011. The Committee reports and provides advice to the Director-General, Queensland Department of Health via an annual report and on a needs basis. The QPPAMRC was established to:
The Committee functions collaboratively with the Statewide Anaesthesia and Perioperative Care Clinical Network (SWAPNET), other relevant clinical networks and the Private Hospitals Association of Queensland. |
Healthcare Improvement Unit, Clinical Excellence Queensland | Quality improvement initiative The QPPAMRC functions under the authority of the Hospital and Health Boards Act 2011, Part 6, Safety and quality, Division 1 Quality assurance committees, the purpose of which as defined in Section 81, is to improve the safety and quality of health services by providing protections for quality assurance committees established under the division. |
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Nil |
Nil |
Queensland
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| ACSQHC-ARCR-070 | Trauma | Trauma | Australia New Zealand Trauma Registry | ATR | Ancelin McKimmie, Monash University, ancelin.mckimmie@monash.edu |
2011 | The Australia New Zealand Trauma Registry (ATR) collects 90 data-points in accordance with the Bi-national Trauma Minimum Dataset for Australia and New Zealand, for severely injured patients (ISS>12) or death after injury, from 28 Australian and seven New Zealand major trauma centres. The ATR provides risk adjusted outcomes to trauma centres and continues to increase its capture of major trauma through rigorous recruitment. The ATR focuses on monitoring trauma care, from time of incident to discharge from definitive care, in order to reflect and act upon emerging trends and demands on the trauma system across Australia and New Zealand. Collecting and analysing information about trauma patients, their management and their injury outcomes informs future improvements to health service provision and development, with the long term societal aim of reducing preventable deaths and permanent disability as a result of injuries. |
Alfred Health through the National Trauma Research Institute. Monash University is contracted to manage the ATR database, including data storage, safety, security, and the provision of analytical support services. |
Alfred Health HREC: Project 241/12 |
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Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
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| ACSQHC-ARCR-080 | Immune-mediated Inflammatory Myopathies | Nil | The Australasian Myositis Registry | The Myositis Registry | 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 |
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Nil |
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| ACSQHC-ARCR-092 | Burns injuries | Major burns | Burns Registry of Australia and New Zealand | BRANZ | Lincoln Tracy, Monash University, anzba.registry@monash.edu |
2009 | 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. |
Monash University | CF08/2431 - 2008001248, Monash University HREC |
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Nil |
Nil |
https://www.monash.edu/medicine/sphpm/branz/about Queensland
New South Wales
Victoria
Tasmania
South Australia
Western Australia
Northern Territory
New Zealand
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| ACSQHC-ARCR-095 | Frailty | Dementia | Western Sydney Clinical Frailty Registry | WSCRF | Nil |
Associate Professor Caleb Ferguson, Western Sydney University & Western Sydney Local Health District, |
2020 | The Western Sydney Clinical Frailty Registry is designed:
Secondary objectives: |
Western Sydney Local Health District | Western Sydney Local Health District HREC 2019/ETH12635 |
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Frailty and Performance measures (FI-ED, Rockwood Clinical Frailty Scale and the AKPS) |
Frailty and Performance measures (FI-ED, Rockwood Clinical Frailty Scale and the AKPS) |
New South Wales
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| ACSQHC-ARCR-103 | Prostate Cancer | High burden cancers | Prostate Cancer Outcomes Registry - Australia and New Zealand | PCOR-ANZ | Marie Pase, Monash University, marie.pase@monash.edu and pcor-anz@monash.edu |
2012 | PCOR-ANZ (Prostate Cancer Outcomes Registry - Australia and New Zealand) is a large-scale prostate cancer registry that collects information on the care provided and the outcomes for men diagnosed with prostate cancer in Australia and New Zealand. Clinical and patient-reported data are collected within Australian jurisdictions and in New Zealand. Our purpose is to monitor; benchmark and report on prostate cancer treatment and care; provide risk adjusted, evidence based data to clinicians, hospitals and decision makers on prostate cancer management. Additionally, the registry aims to foster improved quality of treatment and care for men diagnosed with prostate cancer and research leading to improvement in care and survival and enabling comparisons across countries. |
Monash University | Monash University Human Research Ethics Committee Reference: 21692 |
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Expanded Prostate cancer Index Composite Short Form (EPIC-26) - Quality of Life, EORTC QLQ –PR25 and questions from the utilisation of sexual medications/devices (Libido questions only) questionnaire |
Nil |
https://prostatecancerregistry.org/whos-involved/ Australian Capital Territory
Victoria
New South Wales
Queensland
Northern Territory
South Australia
Tasmania
New Zealand
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| ACSQHC-ARCR-106 | Obesity | Nil | Bariatric Surgery Registry | BSR | Ms Jennifer Holland, Monash University, med-bsr@monash.edu |
2012 | The Bariatric Surgery Registry is a population-based, observational, quality improvement study of persons with obesity who have had bariatric surgery. Its purpose is to gather and analyse information which is used to monitor the safety of bariatric surgery and enhance the quality of care received by persons undergoing bariatric surgery in Australia and New Zealand. Anyone who undergoes bariatric surgery in Australia or New Zealand is eligible for inclusion in the study. The registry collects information on the operation performed, who performed the operation, where the operation occurred, complications from the surgery, weight at various time points, and diabetes status and management. The incidence of adverse events (unplanned hospital readmission, unplanned return to theatre, unplanned ICU admission) and deaths related to bariatric surgery are monitored for ninety days after surgery for all participants. Clinical outcomes for participants who are enrolled with their initial bariatric procedure are assessed annually to determine long term health effects of having bariatric surgery by following weight/body mass index (BMI) changes, differences in managing diabetes in patients identified as diabetic, the need for revision surgery, and vital status. |
Monash University | HREC/18/Alfred/75 (NMA 40238) |
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PROMs for the Bariatric Surgery Registry are currently under development and planned for collection in 2022 |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
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| ACSQHC-ARCR-107 | Aortic valve Implant for Aortic Stenosis | Cardiac | Transcatheter Aortic Valve Implantation Registry | TAVI-R | Anita Deakin, South Australian Health & Medical Research Institute, anita.deakin@sahmri.com |
2018 | The objective of the TAVI Registry (TAVI-R) is to define, improve and maintain the safety and quality of care for patients undergoing TAVI procedures. The TAVI-R aims to:
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Australasian Cardiac Outcomes Registry | Bellberry HREC Reference No: 2017-10-754 & Southern Adelaide Clinical Human Research Ethics Committee Reference No: HREC/18/SAC/67 |
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Nil |
New South Wales
Queensland
South Australia
Tasmania
Victoria
Western Australia
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| ACSQHC-ARCR-109 | Hepatitis C Liver Disease | Nil | An Observational Prospective Epidemiological Registry in Australia of Hepatitis C Virus Liver Disease | OPERA-C | Nil available |
Dr Paul Clark, Mater Adult Hospital, Brisbane Queensland Australia, drpjclark@gmail.com |
2015 | This is a prospective, multi-centre, observational, national registry of HCV infected patients. The purpose of the registry is to establish a prospective national registry of patients with HCV liver disease attending ALA CRN liver clinics and hepatitis treatment centres, to better understand the epidemiology, treatment outcomes and health care burden and costs of the HCV pandemic. The aims include:
The population includes:
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Gastroenterology Society of Australia Liver Faculty | Royal Brisbane and Women's Hospital HREC/15/QRBW/183 |
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Nil |
Nil |
Australian Capital Territory
New South Wales
Queensland
South Australia
Victoria
Western Australia
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| ACSQHC-ARCR-127 | Myelodysplastic Syndrome | High burden cancers | Myelodysplastic Syndrome Registry | MDSlink | Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu |
2018 | The aims of the MDS Registry are to:
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Monash University | Monash Health Human Research Ethics Committee Reference: HREC/18/MonH/341 |
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Nil |
Nil |
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| ACSQHC-ARCR-130 | Knee and Hip Osteoarthritis | Musculoskeletal disorders | Arthroplasty Outcomes in Regional Australia | AORA | Nil |
Corey Scholes, EBM Analytics, cscholes@ebma.com.au |
2020 | The Arthroplasty Outcomes in Regional Australia (AORA) registry is a clinical quality registry (self-reported) run on behalf of select orthopaedic surgeons in private practice in Grafton, NSW. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for knee or hip osteoarthritis. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice. |
Dr Sam Martin, Specialist Orthopaedic Centre, Grafton, NSW | 2020/ETH01498; North Coast NSW Local Health District HREC |
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Nil |
New South Wales
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| ACSQHC-ARCR-138 | Immunisation | Nil | Surveillance of Adverse Events Following Vaccination in the Community | SAEFVIC | Professor Jim Buttery, Murdoch Children’s Research Institute, The Royal Children’s Hospital, jim.buttery@mcri.edu.au |
2007 | Adverse event following immunisation (AEFI) is ‘an unwanted or unexpected event following the administration of a vaccine(s). AEFIs may be caused by a vaccine(s) or may occur by coincidence: that is, it would have occurred regardless of vaccination’. AEFIs also include conditions that may occur following the incorrect handling and/or administration of a vaccine. SAEFVIC aims to provide increased early detection and appropriate rapid response to AEFI in adults and children, integrated with clinical support for reporting health care workers and patients/families within Victoria. The intention is to enhance the passive surveillance of all significant or rare AEFI, regardless of causality. The surveillance information is used to detect vaccine safety ‘signals’, prompt action and maintain confidence in immunisation programs. This collaboration aims to deliver a system with world-leading sensitivity for Victorian health authorities to rapidly detect and research vaccine safety concerns, whether they are new trends or just temporally associated events. |
Murdoch Children’s Research Institute | The Royal Children’s Hospital Melbourne HREC Reference number 37914A |
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Nil |
Victoria
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| ACSQHC-ARCR-139 | Coronary Angiography (diagnostic) Coronary angioplasty/stenting - percutaenous coronary intervention (interventional) |
Ischemic heart disease | Coronary Angiogram Database of South Australia | CADOSA | Rosanna Tavella, The University of Adelaide, and Central Adelaide Local Health Network, SA Health, rosanna.tavella@adelaide.edu.au |
2012 | 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: 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. |
The University of Adelaide | Central Adelaide Local Health Network HREC: HREC/15/TQEH/252 |
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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. |
Nil |
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| ACSQHC-ARCR-149 | Endometriosis and adenomyosis | Nil | National Endometriosis Clinical and Scientific Trials Registry | NECST Registry | https://www.jeanhailes.org.au/necst-network/the-necst-registry |
Cecilia Ng, Jean Hailes for Women's Health, cecilia.ng@jeanhailes.org.au |
The NECST Registry is a national resource of standardised patient data that will facilitate high quality research aiming to understand the causes of endometriosis, improve diagnosis and treatment outcomes, and reduce the burden of disease for patients living with endometriosis, endometriosis-related symptoms, or endometriosis-related conditions (like adenomyosis). Population: Women and those assigned female at birth aged 18+, have had surgery which has confirmed that you have endometriosis or adenomyosis or have any of the following symptoms - persistent pelvic pains, problems with falling pregnant, excessive menstrual bleeding or bleeding between periods, heavy periods, pain when urinating, pain with bowel motions/passing stools and pain with sex. Data collection and outcomes: Health and clinical data are collected across eight modules 1. Consent and participant demographics 2. Clinical presentation and medical history 3. Patient reported outcome measures (PROMs; EQ-5D and EHP-30) 4. Environmental and lifestyle risk factors 5. Imaging tests 6. Medical management 7. Surgical management 8. Histopathology |
Jean Hailes for Women's Health | Monash Health HREC/62508/MonH-2020 |
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To be determined |
New South Wales
South Australia
Victoria
|
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| ACSQHC-ARCR-150 | Breast, colorectal, lung, prostate and ovarian cancer | High burden cancer | Continuous Improvement in Care - Cancer Project | CIC Cancer | Christobel Saunders, University of Western Australia, christobel.saunders@uwa.edu.au |
2020 | The Continuous Improvement in Care – Cancer (CIC Cancer) Project is a multi-institutional program of research that seeks to bring value-based healthcare (VBHC) to public and private healthcare settings in Western Australia (WA). The project aims to create value through improving outcomes whilst containing costs (www.ciccancer.com). This is achieved through measuring and acting on variations in outcomes that are important for people diagnosed with breast, colorectal, lung, prostate and ovarian cancer. The results of combined clinical and patient-reported outcome measures will feed back into clinical management processes to improve care; help determine needs for clinical intervention and allow units to assess and improve their practices. |
University of Western Australia | South Metropolitan Health Services HREC RGS 1117 and St John of God Health Care #1422 |
|
Consortium for Health Outcomes Measurement International (ICHOM) data sets and developed dataset for ovarian cancer. |
Nil |
Western Australia
|
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| ACSQHC-ARCR-157 | Aged care | Nil | Registry of Senior Australians | ROSA | Sarah Bray, South Australian Health and Medical Research Institute (SAHMRI) ROSA@sahmri.com |
2017 | The Registry of Senior Australians (ROSA) is a cross-sectoral data platform designed to monitor the health, service utilisation, medication use, mortality, and other outcomes of people receiving aged care services in Australia. ROSA brings together datasets collected from the aged care and health care sector by the Commonwealth and state health authorities, to provide us with a full picture of the ageing pathway for individuals in aged care. ROSA produces evidence to guide decision-making for quality, coordinated, efficient, innovative and age-friendly services and practices. Like other Australian clinical quality registries, ROSA was designed to monitor the effectiveness and appropriateness of aged care services provided to older Australians and to identify variance and advise on best practices. In addition to conducting comprehensive reviews of its captured population, including evaluations of aged care pathways and service utilisation, ROSA also has an 'Outcome Monitoring System' of quality and safety indicators for aged care providers and facilities. |
South Australian Health and Medical Research Institute (SAHMRI) | SA Department for Health and Wellbeing Human Research Ethics Committee HREC/17/SAH/125, approved 01/03/2018 and AIHW Ethics Committee EO2018/2/429, approved 08/05/2018 |
|
Nil |
Nil |
Not applicable. ROSA is a registry that monitors South Australians seeking aged care services each year. It uses existing information captured by the Commonwealth National Aged Care Data Clearinghouse, Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and the National Death Index, linked to South Australian hospitalisation, emergency department presentations and ambulance services datasets to monitor its cohort. By bringing together these diverse datasets it captures the whole picture of the ageing pathway. |
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| ACSQHC-ARCR-165 | Prostate cancer | High burden cancers | TrueNTH Global Registry - Prostate Cancer Outcomes | TNGR | Nil |
Jacinta Opie and Fanny Sampurno, Monash University, pco_dcc@monash.edu |
2017 | 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. |
Monash University | HREC/16/Alfred/98 |
|
The EPIC‐26, the EORTC QLQ‐PR25, the Utilisation of Sexual Medications/Devices questions taken from a paper by Miller et al. |
Nil |
|
| ACSQHC-ARCR-170 | Diabetes | Diabetes | Australian National Diabetes Audit | ANDA | Sophia Zoungas, School of Public Health and Preventive Medicine - Monash University, sophia.zoungas@monash.edu |
2013 | The Australian National Diabetes Audit (ANDA) is a well-established, biennial, quality activity facilitated by the National Association of Diabetes Centres, in services providing care for people with diabetes across Australia (all states and territories). Participating diabetes centres including primary, secondary and tertiary care receive an individualised report of their patient data on the clinical status and outcomes of individuals attending services providing diabetes care across the country. The aim of ANDA is for diabetes centres to use this information for quality improvement and benchmarking purposes. ANDA captures patients aged over 18 years with diabetes attending participating centres across Australia. The outcomes collected alternate each year through the following audits: 1. ANDA-AQCA (Australian Quality Clinical Audit) – The focus is on clinical indicators known to impact on the outcomes of the person with diabetes 2. ANDA-AQSMA – (Australian Quality Self-Management) – the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected. |
Monash University | Monash Health HREC/17/MonH/117 |
|
During the ANDA-AQSMA data collection, the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected. |
During the ANDA-AQSMA data collection, the focus is on self-management and diabetes distress. Data related to diabetes education, self-care practices and quality of life is collected. |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
|
|
| ACSQHC-ARCR-176 | Integrative healthcare treatment (blending of evidence-informed complementary medicine therapies with conventional healthcare) | Nil | Western Sydney Integrative Health (WSIH) Patient Registry Pending, not operational at time of publication |
WSIH Patient Registry | https://www.westernsydney.edu.au/nicm/western_sydney_integrative_health |
Suzanne Grant,NICM Health Research Institute, Western Sydney University, S.Grant@westernsydney.edu.au |
2020 | 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. |
Western Sydney University | Western Sydney University HREC: H13419 | The following are planned:
|
It is intended that the following PROMs will be collected:
Condition-specific PROMs as follows:
|
It is intended that the following PREMs will be collected:
|
Western Sydney Integrative Health |
| ACSQHC-ARCR-177 | Stroke | Stroke | Australian Stroke Clinical Registry | AuSCR | Dominique Cadilhac, The Florey Institute of Neuroscience and Mental Health,admin@auscr.com.au |
2009 | The AuSCR provides a platform for participating hospitals to collect data on processes of care and outcomes for patients admitted with acute stroke or transient ischaemic attack (TIA). Data are used to improve the quality of stroke care nationally. The process of care variables collected align with the National Clinical Guidelines for Stroke Management. The AuSCR Office centralises the collection of follow-up data on patient reported outcomes three to six months after admission. Outcomes collected include stroke recurrence, hospital readmission, health status, disability (as measured with the modified Rankin Scale), and quality of life measures (using the EuroQol EQ-5D-3L and Visual Analogue Scale). |
The AuSCR is led by a consortium comprised of the Florey Institute of Neuroscience and Mental Health (The Florey), Stroke Society of Australasia, Stroke Foundation and George Institute for Global Health. The Florey Institute is the Data Custodian. | In general each state has a lead HREC. Some states also have multiple HRECs as some hospitals do not accept the approval of other committees. |
|
|
Nil |
https://auscr.com.au/about/list-of-participating-hospitals/ Australian Capital Territory
New South Wales
Queensland
South Australia
Tasmania
Victoria
|
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| ACSQHC-ARCR-181 | Cancer | High Burden Cancer | South Australian Clinical Cancer Registry | SACCR | https://www.wellbeingsa.sa.gov.au/evidence-data/south-australian-cancer-registry |
Helen Thomas, Director, Epidemiology Branch, Wellbeing SA, Helen.Thomas2@sa.gov.au |
1987 | The South Australian Clinical Cancer Registry monitors and provides information on the safety and quality of cancer care in the health system, and provides information for the evaluation of any new treatments or models of care and for research purposes. The SACCR collects data including clinically derived stage, grade, differentiation, treatments, prognostic indicators for patients treated at participating South Australian hospitals. This collection complements the population-based SA Cancer Registry. Historically a number of cancer sites were collected, current priority cancer types with the SACCR collection include breast, colorectal, lung, melanoma and gynaecological cancers. |
Wellbeing SA (attached office of the Department for Health and Wellbeing) | Quality improvement initiative. The registry is gazetted and authorised under Part 7 section 64 of the Health Care Act 2008 (SA). |
|
Nil |
Nil |
South Australia
|
| ACSQHC-ARCR-189 | People with a Fontan circulation | Neonatal critical care | Australian and New Zealand Fontan Registry | ANZ Fontan Registry | Rachael Cordina, Royal Prince Alfred, rachael.cordina@sydney.edu.au |
2009 | A normal heart comprises two pumping chambers called ventricles. Being born with a single ventricle is one of the most severe conditions in newborns with projected mortality of 25-40% within the first 4 years of life. A series of operations provide a lifeline to these patients. The last of these is the Fontan procedure; a procedure performed at around 4 years of age, that connects the veins directly to the pulmonary arteries. It was long believed that these surgeries would not result in long-lasting survival, however, under the leadership of the Australian and New Zealand Fontan Registry (ANZ Fontan Registry), it has now been demonstrated that survival 35 years after Fontan will reach 85%. The ANZ Fontan Registry is the largest database of patients surviving with a single ventricle and the only population-based registry of Fontan patients’ data. It aims to facilitate a greater understanding of these patients’ short and long term health outcomes, as well as factors which can be modified to improve their health and wellbeing. Being the largest registry of its kind, and with strong partnerships between multiple sites throughout Australia and New Zealand, the ANZ Fontan Registry enables high-quality research (including clinical trials) to be conducted in order to optimise and standardise care for this population. |
Murdoch Children's Research Institute | Royal Children's Hospital Melbourne HREC 36260 |
|
PedsQL and Patient PCQT questionnaires across various projects but not routinely |
PedsQL and Patient PCQT questionnaires across various projects but not routinely |
New South Wales
Queensland
South Australia
Victoria
Western Australia
New Zealand
|
|
| ACSQHC-ARCR-195 | Perioperative Medicine, Anaesthesia and Surgery | Nil | Australian & New Zealand College of Anaesthetists Perioperative Clinical Outcomes Registry: Pilot | ANZCA PCORE: Pilot | Nil available |
Dr Jennifer Reilly, Monash University/Alfred Hospital, jennifer.reilly@monash.edu |
2020 | The aim of ANZCA PCORE: Pilot is to develop a pilot population-based perioperative clinical quality registry to optimise quality of care provided to individuals undergoing anaesthesia and surgery, in accordance with the Operating Principles of the Framework for Australian Clinical Quality Registries. The target population is adults undergoing inpatient non-cardiac surgery (requiring a hospital stay of at least 1 night postoperatively). Public and private hospitals in each state and territory of Australia are invited to join ANZCA PCORE: Pilot. ANZCA PCORE: Pilot plans to collect a minimum dataset of perioperative risk factors, process of care data (including critical care admission) and mortality data to provide:
The pilot registry will initially be based at Monash University but has ethics approval to be hosted at the Australian Institute of Health and Welfare in Canberra and enabled for data linkage to the ANZICS CORE Registries and the National Death Index. |
Monash University | Alfred Hospital HREC - Project 60317 |
|
The registry has ethics approval to collect PROMS as per the ICHOM standard sets. |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
|
| ACSQHC-ARCR-196 | Thyroid Cancer | High burden cancers | Australian and New Zealand Thyroid Cancer Registry | ANZTCR | Dr Liane Ioannou, 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 |
|
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
New South Wales
South Australia
Queensland
|
|
| ACSQHC-ARCR-199 | Prostate Cancer | High burden cancers | South Australian Prostate Cancer Clinical Outcomes Collaborative | SA-PCCOC | 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 |
|
|
EPIC-26, IPSS, plus demographics |
|
|
| ACSQHC-ARCR-203 | Anaesthesia for day surgery | Nil | Day Care Anaesthesia Outcomes Registry | DayCOR | Dr Ken Sleeman, kensleeman@gmail.com |
2018 | In 2016–2017, 2.34 million anaesthetics were performed for day surgery procedures in Australia. Currently there is no established method to determine the quality of recovery in these patients, hence we do not know which patients experience suboptimal outcomes. This evidence gap has implications for patient care, and quality improvement initiatives at clinician, hospital and state levels. DayCOR is a software system which collects, alerts, manages and analyses patient demographic and patient-reported data. A survey link is automatically sent to patients via SMS and email 24 hours after discharge, with a reminder at 48 hours. Clicking the link opens their web-based survey. After a short introduction, patients opt in to a 15-question review consisting of clinical, process and patient experience questions. The aims of this registry:
The target population is all admitted patients who undergo anaesthesia or sedation for day surgery. Clinical outcomes are degree of pain, nausea/vomiting, sleep quality, confusion, falls, ability to return to usual activities; process outcomes are analgesia and antiemetic availability and effectiveness, adherence to postoperative and medication instructions, requirement for post-discharge medical contact; patient experience outcomes are positive and negative hospital experiences, and suggestions to improve health care. Any concerning responses such as pain or prolonged vomiting are automatically emailed to the treating anaesthetist and site administrator. |
Day Care Anaesthesia Special Interest Group, Australian Society of Anaesthetists | Bellberry HREC: 2020-06-589-A-1 |
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|
|
Victoria
Queensland
|
|
| ACSQHC-ARCR-220 | Clinical ophthalmology | Nil | Save Sight Registries | SSR | Professor Mark Gillies, Sydney Eye Hospital and the University of Sydney, ssi.ssr@sydney.edu.au |
2010 | 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:
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. |
University of Sydney | 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 |
|
|
Nil |
For the sake of privacy of participating clinicians, we cannot provide a comprehensive list of participating sites. However, hospitals include:
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| ACSQHC-ARCR-228 | Hydrocephalus | Nil | Australasian Shunt Registry | Nil | https://nsa.org.au/NSA/Shunt_Registry/NSA/Shunt_Registry/About_the_Regi…">https://nsa.org.au/
|
Katrina Smith, Neurosurgical Society of Australasia,& nbsp;shunt.registry@nsa.org.au
|
2016 | The primary purpose of the Shunt Registry is to systematically collect information related to the use of cerebrospinal (CSF) shunts to guide best clinical practices, processes and improve health outcomes for patients with CSF shunts. Any hospital throughout Australasia where cerebrospinal fluid (CSF) shunt surgery is performed is eligible to contribute data to the Shunt Registry & nbsp; Any patient undergoing a CSF shunt related procedure in an ethics approved site is eligible to contribute data to the Shunt Registry. There are no additional inclusion or exclusion criteria.
The Shunt Registry key objectives are to:
|
Neurosurgical Society of Australasia | Sydney Children's Hospital Network HREC 16 196 - lead HREC for sites operating under NMA. All other sites have ethics approval as required. | Feedback to contributing clinicians |
Nil |
Nil |
Australian Capital Territory
New South Wales
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
| ACSQHC-ARCR-231 | Elective spine surgery | Musculoskeletal disorders | Australian Spine Registry | ASR | Esther Apos, Spine Society of Australia, esther.apos@monash.edu |
2016 | The ASR will tell us about:
The aim of this project is to develop the pilot of a population-based spine surgery clinical registry to optimise quality of care provided to individuals undergoing spine surgery. |
Spine Society of Australia | Melbourne Health HREC Reference: HREC/16/MH/93 |
|
The Oswestry Disability Index (ODI) for low back pain and the Neck Disability Index (NDI) for acute or chronic disability of the neck. The 3 Level (EQ5D™) questionnaire is used to assess general quality of life. |
Nil |
New South Wales
Queensland
Tasmania
Victoria
Western Australia
|
|
| ACSQHC-ARCR-233 | Foot and Ankle conditions | Musculoskeletal disorders | Sydney Orthopaedic Foot and Ankle Research Institute Clinical Quality Registry | SOFARI | Nil |
Corey Scholes, EBM Analytics, cscholes@ebma.com.au |
2020 | The SOFARI registry is the clinical registry for a collaborative group of foot and ankle surgeons in private practice. For this registry, clinical data is compiled alongside Patient Reported Outcome Measures (PROMs) for patients diagnosed with conditions of the foot and ankle. Clinical history, treatment characteristics, functional and patient-reported outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). |
Dr Andrew Wines, Sydney Orthopaedic Foot and Ankle Research Institute | St Vincent's Hospital HREC; 2020/ETH00615 |
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Nil |
New South Wales
|
| ACSQHC-ARCR-245 | Orthopaedic conditions affecting the knee | Musculoskeletal disorders | Prospective Registry of Knee Pathology | PRoPath | Nil |
Corey Scholes, EBM Analytics, cscholes@ebma.com.au |
2019 | PRoKPath is the clinical quality registry (self-reported) for privately consulting knee surgeon, Mr Tim Lording. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for knee conditions including osteoarthritis, rupture of the anterior cruciate ligaments, and conditions involving other structures of the knee joint. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice. |
Mr Tim Lording, Melbourne Orthopaedic Group | Bellberry HREC 2020-01-048 |
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Nil |
Victoria
|
| ACSQHC-ARCR-246 | Hip fracture | Musculoskeletal disorders | Australian and New Zealand Hip Fracture Registry | ANZHFR | Elizabeth Armstrong, Neuroscience Research Australia, e.armstrong@neura.edu.au |
2015 | 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. |
Neuroscience Research Australia | 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 |
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. |
EQ5D5L optional collection at 120 days after admission |
Nil |
New South Wales
Victoria
Tasmania
Queensland
South Australia
Western Australia
|
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| ACSQHC-ARCR-247 | Congenital Heart Disease | Nil | Australia and New Zealand Congenital Outcomes Registry for Surgery | ANZCORS | Nil |
Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au |
2020 | A benchmarking registry for outcomes of paediatric cardiac surgery for Australia and New Zealand |
Queensland Health | Children’s Health Queensland Hospital and Health Service HREC /2019/QCHQ/49534 |
|
Nil |
Nil |
New South Wales
Queensland
Victoria
Western Australia
New Zealand
|
| ACSQHC-ARCR-248 | Dementia, Mild Cognitive Impairment | Dementia | Australian Dementia Network Registry | ADNeT Registry | Kasey Wallis, Monash University, adnet.registry@monash.edu |
2020 | The Australian Dementia Network (ADNeT) Registry is a Clinical Quality Registry (CQR) for people diagnosed with either dementia or mild cognitive impairment (MCI).The aims of the registry are to:
Eligible patients are identified and recruited initially from specialist services (e.g. memory clinics) and individual medical specialists (e.g. geriatricians and neurologists) involved in the diagnosis of dementia. Data is collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. The registry is operated as part of the wider ADNeT initiative, an NHMRC-funded and philanthropic donor supported initiative, and is being established via a pilot stage whereby methodologies for implementation will be developed and tested at several pilot sites. Learnings from the pilot will inform the national roll-out of the ADNeT Registry. The ADNeT registry will be developed and implemented to comply with the national operating principles for CQRs and governed by the ADNeT Registry Steering Committee. |
Monash University | Alfred Hospital HREC - Project 44037 (Local reference: 424/18) |
|
The ADNeT Registry baseline participant and carer surveys included two patient/carer-reported outcome measure questions. The two questions were developed based on quality of life questions used in earlier studies. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021. |
The ADNeT Registry baseline participant and carer surveys include nine patient/carer-reported experience measure questions. Seven of these questions were developed based on experience questions used in earlier studies, and the remaining two were developed by the ADNeT Registry Survey Working Group. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021. |
New South Wales
Queensland
South Australia
Tasmania
Victoria
Western Australia
|
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| ACSQHC-ARCR-254 | Pancreatic Cancer | Nil | Upper Gastrointestinal Cancer Registry (UGICR) – Pancreatic Module | UGICR – Pancreatic Module | Ms Elysia Greenhill, Monash University, ugicr@monash.edu |
2015 | The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The pancreatic module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the pancreas, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals. |
Monash University | Monash Health HREC: Reference HREC/15/MonH/134 Aboriginal Health and Medical Research Council of New South Wales HREC: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611 |
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New South Wales
Victoria
|
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| ACSQHC-ARCR-258 | Degenerative Cervical Myelopathy | Nil | The Myelopathy Natural History Australian Degenerative Cervical Myelopathy Registry | The MYNAH Registry | Nil |
Dr Ashish D Diwan, University of New South Wales (UNSW), Sydney, a.diwan@unsw.edu.au |
2023 | Degenerative cervical Myelopathy (DCM) is the commonest cause of spinal cord dysfunction worldwide. Clinical features include localised neck pain, impairment of motor functions in the upper and lower limbs, loss of bladder function that can eventually lead to paralysis and even death if treatment is not sought. Although surgical decompression of the spinal cord remains the mainstay of treatment, very few patients achieve complete recovery, and the majority of patients are left with life-long disability. Due to lack of a diagnostic criteria and many mimicking conditions, DCM is widely underdiagnosed and hence its true incidence and prevalence remains unknown. The MYNAH (MYelopathy NAtural History) registry is a multi-centre, prospective, observational cohort study enrolling patients with Degenerative Cervical Myelopathy (DCM) across Australia. MYNAH Registry is the world's first registry to understand the natural history of DCM in a systematic manner. The purpose is to determine the natural history of DCM, to describe the influence of age, gender, smoking and BMI on outcome of DCM, to describe the demographics, comorbidities, genetic predisposition, disease severity and prognosis of DCM and to compare the outcomes between the operative and non-operative cases of DCM. Patients with a diagnosis of DCM by a spine surgeon or neurosurgeon from various participating clinical sites are included in the registry. The outcome measures are Neck Disability Index (NDI), modified Japanese Orthopaedic Association Score (mJOA), EQ-5D-5L questionnaire and Nurick grade. Follow-up for all participants is conducted biannually, which includes completion of mJOA score, Nurick grade and clinical examination at their respective study site and completion of NDI and EQ-5D-5L questionnaires. |
Spine Service, St George Hospital, SESLHD, University of New South Wales (UNSW), Sydney | University of New South Wales (UNSW), Sydney HREC reference number: HC2207011 |
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Nil |
New South Wales
Private practices of:
Recruiting further sites on ongoing basis |
| ACSQHC-ARCR-262 | Prostate cancer | High burden cancers | NSW Prostate Clinical Cancer Registry | PCCR | Serina Teuss, Cancer Institute NSW, Serina.Teuss@health.nsw.gov.au |
2015 | The PCCR captures diagnosis, treatment, quality of life and mortality data for men diagnosed with prostate from 1 January 2015 onwards. Only men who have been diagnosed or treated by a participating clinician and hospital across NSW are eligible for recruitment into the registry. The data collected measures the quality of care and provides feedback to consumers and health professionals about the management of prostate cancer in the state. |
Cancer Institute NSW | Cancer Institute NSW HREC reference: 2015/02/578 |
|
The Expanded Prostate Cancer Index Composite (EPIC-26) Short Form - a quality of life questionnaire |
Nil |
https://www.cancer.nsw.gov.au/research-and-data/cancer-data-and-statist… New South Wales
|
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| ACSQHC-ARCR-263 | Genetic disorders of haemoglobin (haemoglobinopathies) | Nil | Haemoglobinopathy Registry | HbR | Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu |
2014 | 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:
|
Monash University | HREC/16/MonH/156, Monash Health HREC | Reporting via research publications only |
Nil |
Nil |
Victoria
New South Wales
South Australia
Queensland
Western Australia
|
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| ACSQHC-ARCR-268 | Burn Injuries | Burns | NSW Statewide Burn Injury Service Registry | SBIS registry | https://aci.health.nsw.gov.au/networks/burn-injury/resources |
Anne Darton, NSW Health - Agency for Clinical Innovation, anne.darton@health.nsw.gov.au |
2004 | The SBIS Registry has been established to provide a comprehensive registry of severe burn injuries treated at the three NSW Burns Units: the Children’s Hospital at Westmead, Royal North Shore Hospital and Concord Repatriation General Hospital. Burns patients represent a well defined and distinct subgroup of trauma patients in NSW. Extensive burns are associated with substantial treatment and rehabilitation costs, and many result in permanent disability, highlighting the need to monitor the incidence, management and outcomes of burn injury. The data collected enables the registry to meet its aims of monitoring, surveillance and clinical evaluation and is critical for:
|
NSW Agency for Clinical Innovation Statewide Burn Injury Service | Cancer Institute NSW reference: 2015/02/578 |
|
Nil |
Nil |
|
| ACSQHC-ARCR-269 | Cardiac procedures and devices | Ischemic heart disease | Victorian Cardiac Outcomes Registry | VCOR | 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:
The outcomes measured and reported for PIC include:
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. |
|
Nil |
Nil |
https://vcor.org.au/participating-sites Percutaneous Coronary Intervention Hospital
Regional STEMI Hospital
Heart Failure Hospital
|
|
| ACSQHC-ARCR-270 | Severe asthma | Nil | Australian Severe Asthma Dupilumab Registry | ASADR | https://thoracic.org.au/research-and-awards/australasian-severe-asthma-registry-asar/ |
Rita Salameh, The Thoracic Society of Australia and New Zealand, rita.salameh@thoracic.org.au |
2023 | The Australasian Severe Asthma Dupilumab Registry (ASADR) is a treatment-specific registry attached to the larger Australasian Severe Asthma Registry (ASAR). The ASAR is a large registry which monitors the health and wellbeing of people in Australia and New Zealand who have uncontrolled or severe asthma. As dupilumab is now available on the PBS in Australia, the ASADR is an Australian module attached to ASAR. The purpose of the ASADR is to specifically monitor the health and wellbeing of people with asthma who are receiving dupilumab for the treatment of their severe asthma in Australia. The ASADR will be used to observe benefits and side effects of dupilumab, and to help researchers and clinicians better understand the use of dupilumab treatment in severe asthma. It will also contribute to the greater understanding of treatment options for the severe asthma population. |
The Thoracic Society of Australia and New Zealand (TSANZ) | Hunter New England Local Health District HREC reference 2022/ETH02269 |
|
|
Nil |
New South Wales
Queensland
South Australia
Western Australia
Victoria
|
| ACSQHC-ARCR-284 | Biliary System Cancer | Nil | Upper Gastrointestinal Cancer Registry – Biliary Module | UGICR – Biliary Module | Elysia Greenhill, Monash University, ugicr@monash.edu |
2015 | The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The biliary module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the bile ducts or gallbladder, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals. |
Monash University | National Mutual Acceptance, Monash Health HREC: Reference 15482A Aboriginal Health and Medical Research Council of New South Wales: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611 |
|
PROMs is a future endeavour of this module. |
PREMs is a future endeavour of this module. |
Victoria
|
|
| ACSQHC-ARCR-287 | Upper limb orthopaedic conditions | Musculoskeletal disorders | Patient-Reported outcomes of Upper Limb Orthopaedic disorders registry | PRULO | Nil |
Kevin Eng, Geelong Orthopaedics, kevineng@geelongortho.com.au |
2020 | The PRULO registry is the clinical registry for a collaborative group of upper limb orthopaedic surgeons consulting privately out of Geelong Orthopaedics, Victoria. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for upper limb conditions including osteoarthritis of the shoulder, and rotator cuff tear. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice. |
Geelong Orthopaedics | Barwon Health HREC ref 19_70 |
|
|
Nil |
Victoria
|
| ACSQHC-ARCR-288 | Diabetes | Diabetes | Australian National Diabetes Audit Longitudinal Register | ANDA-L | Sophia Zoungas, School of Public Health and Preventive Medicine, Monash University, sophia.zoungas@monash.edu |
2019 | The Australian National Diabetes Audit Longitudinal Register (ANDA–L) is a sub-study of the Australian National Diabetes Audit (ANDA) with its main focus to prospectively follow up the same cohort of patients over a 2 - 4 year period during the ANDA-AQCA (Australian Quality Clinical Audit) data collection. The data collected are clinical indicators known to have impact on the care of people with diabetes. ANDA-L aims to:
This allows participating centres to observe changes in clinical indicators for people with diabetes at both a group and individual level and offers a rich source of understanding of treatments, and clinical outcomes for people with diabetes. ANDA-L will provide longitudinal descriptive reporting to treating centres for quality management. |
Monash University | Monash Health HREC/48547/MonH-2019 |
|
Nil |
Nil |
New South Wales
Queensland
Victoria
|
|
| ACSQHC-ARCR-290 | Hip and Knee Arthritis requiring Joint Replacement Surgery | Musculoskeletal disorders | Perth Hip and Knee Research Registry | PHKRR | Beth Tippett, Perth Hip and Knee Clinic, Subiaco WA, beth@hipnknee.com.au |
2017 | The Perth Hip and Knee Research Registry is designed to prospectively capture data to allow comparisons in techniques of undertaking hip and knee arthroplasty (joint replacement) surgery. This will look at methods of performing the surgery including the use of advanced technology and robotics as well as methods of individualising position of implants during surgery. All patients undergoing hip or knee replacement surgery at Perth Hip and Knee Clinic will be eligible for inclusion. Patient demographics, intra-operative measurements and data, post-operative patient reported outcome measures, clinical assessment and patient satisfaction will be measured as will radiographic analysis undertaken as routine of care. |
Perth Hip and Knee Clinic | St John of God Health Care HREC ref1388 |
|
|
Patient satisfaction following joint replacement surgery |
Western Australia
|
|
| ACSQHC-ARCR-291 | Haematological malignancy | High burden cancers | Australasian Leukaemia and Lymphoma Group National Blood Cancer Registry | ALLG NBCR | Australasian Leukaemia & Lymphoma Group info@allg.org.au |
2012 | The ALLG NBCR is a national registry collecting clinically annotated data and biospecimens from a patient with a haematological malignancy with a focus on AML, ALL, UL and MDS. Treatment and clinical outcome data are collected for patients and the Australasian haematology community of ALLG members utilise data to inform practice, consider clinical trial inclusion, and to conduct research. |
Australasian Leukaemia & Lymphoma Group | All participating sites are approved by a nominated HREC and their institutional research governance office. A Clinical Trial Research Agreement is also executed between the ALLG and each participating site. 1. Alfred Hospital HREC - Ref # 181/12 2. Canberra Hospital HREC - Ref # 3/13/049 3. Royal Darwin Hospital - Menzies School of Health Research Ref # HoMER13-1985 4. Royal Hobart Hospital HREC Tasmania Network Ref # HH0012836 5. Launceston Hospital HREC Tasmania Network Ref # HH0016511 6. The Queen Elizabeth Hospital HREC – Ref # HREC/12/TQEHLMH/35 7. Sir Charles Gairdner Hospital HRECRMH HREC – Ref # RGS0000001649 8. Royal Melbourne Hospital -Melbourne Health HREC – Ref # HREC/12/MH/106 9. Northern B Health and Disability Ethics Committee (NZ) – Ref # 21/NTB/115 |
The ALLG NBCR is governed by several committees with regular reporting and feedback mechanisms. The ALLG Registry Operations Committee (ROC) oversees the day-to-day operations and performance metrics of the registry to ensure key targets are met. |
Offered to patients with Myelodysplastic syndromes (MDS) |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
|
| ACSQHC-ARCR-292 | Cystic Fibrosis | Nil | The Australian Cystic Fibrosis Data Registry | ACFDR | Professor Susannah Ahern, Academic Lead, Monash University,susannah.ahern@monash.edu |
1996 | The ACFDR is a population-level clinical registry that aims to accurately characterise the demographics, changing patterns of disease and treatments, morbidity and mortality of the population of patients with cystic fibrosis (CF) over time. The registry captures all people diagnosed with CF who attend participating specialist CF treatment centres in Australia (including outreach services), which is estimated to cover over 90% of patients diagnosed with CF nationally. The ACFDR uses either opt-in consent (mainly for paediatric patients) or opt-out consent (for some adult patients) to collect baseline and longitudinal information. Information is collected annually and per hospital or clinic encounter for each patient. The ACFDR has contributed significantly to our understanding of CF in Australia through monitoring trends in measures such as age at diagnosis, method of diagnosis, lung function and weight over time, CF-related complications and treatments, transplantation, mortality and expected age of survival. The registry aims to improve quality of care by monitoring and benchmarking patient outcomes in individual CF centres compared to each other, and compared to their own site over time. The ACFDR is increasingly being used to monitor the impact of new therapies, and to support clinical trials. The ACFDR collaborates with international CF registries via an International CF Registries Harmonisation Committee and with the John Hopkins-led CFTR2 genetic mutation database. |
Cystic Fibrosis Australia | Ethics approval received The Alfred HREC Protocol Number: HREC/16/Alfred/187 |
The ACFDR produces:
|
A project is underway that is exploring suitable PROMs for inclusion in the registry. |
Nil |
Queensland
New South Wales
Tasmania
Victoria
Western Australia
South Australia
Australian Capital Territory
|
|
| ACSQHC-ARCR-294 | Adult and Paediatric Critical Care | Adult critical care | ANZICS Intensive Care Clinical Registries (includes APD, ANZPIC, CCR, ECMO & CLABSI data sets) | ANZICS CORE Registries | Sue Huckson, Australian and New Zealand Intensive Care Society,sue.huckson@anzics.com.au |
1992 | The Australian and New Zealand Intensive Care Society (ANZICS) Centre for Outcome and Resource Evaluation (CORE) is a bi-national peer review and quality assurance program which has provided audit and analysis of the performance of Australian and New Zealand intensive care since 1992. This capability is uniquely provided by ANZICS, which offers an overview across regional, state, federal and international jurisdictions. ANZICS CORE is made up of 5 data sets:
Over 180 sites across Australia and New Zealand submit data regularly to the registries contributing approximately 200,000 individual patient records every year. There are over 2.5 million individual de-identified ICU patient episodes stored in the registry warehouse since 1992. The primary outcome reported by the ANZICS registries to contributing sites is in-hospital mortality. However, the overall long-term survival outcomes of patients who leave ICU alive are unknown. The aims of the ANZICS CORE Registry Program are:
|
Australian and New Zealand Intensive Care Society | Quality improvement initiative A Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973 |
|
In development |
In development |
https://www.anzics.com.au/annual-reports/ Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
|
| ACSQHC-ARCR-307 | Lymphoma and related diseases | High burden cancers | Lymphoma and related Diseases Registry | LaRDR | Transfusion Research Unit, Monash University, SPHPM-Lymphoma@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:
Inclusion criteria:
Exclusion criteria
The following categories of data items will be collected:
|
Monash University | 16213A/Monash Health HREC |
|
Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
|
| ACSQHC-ARCR-310 | Prostate Cancer | High burden cancers | Prostate Cancer Outcomes Registry - Northern Territory | PCOR-NT | Cheryl Plawecki, NT Radiation Oncology, Alan Walker Cancer Care Centre Royal Darwin Hospital, ProstateRegistry.DoH@nt.gov.au |
2015 | The purpose of this registry is to record patients demography, treatments and clinical outcomes to improve quality of care for men diagnosed with prostate cancer. The Registry, PCOR-NT office is located at Alan Walker Cancer Care Centre, Royal Darwin Hospital. PCOR-NT has registered 427 men with newly diagnosed prostate cancer in its registry (as at 19/07/2021). NT clinical researchers are able to request access to PCOR-NT data through the Steering Committee. PCOR-NT transfer data to PCOR-ANZ for the publication of the annual reports. PCOR-NT Steering Committee Members consist of Oncologists, Urologists, NT Department of Health Representatives, Prostate Cancer Nurse and Patient Representative. |
Alan Walker Cancer Care Centre, Top End Health Services Northern Territory | Central Australian Human Research Ethics Committee CAHREC-16-392; Menzies School of Health Research HREC2015-2407 |
|
The Expanded Prostate Cancer Index Composite (EPIC-26) Short Form - a Quality of Life questionnaire |
Nil |
https://prostatecancerregistry.org/whos-involved/ Northern Territory
|
|
| ACSQHC-ARCR-317 | Islet cell and pancreas transplantation | Adult critical care | Australia and New Zealand Islet and Pancreas Transplant Registry | ANZIPTR | ANZIPTR manager, Australia and New Zealand Islet and Pancreas Transplant Unit, info@anziptr.org |
1986 | ANZIPTR is based at Westmead Hospital in NSW, Australia. The Registry operates at Westmead Hospital under contract from the Australian Organ and Tissue Authority. The registry is responsible for recording and maintaining data about the islet and pancreas transplants performed in Australia and New Zealand. Information about donors and recipients of pancreas and islets transplants is collected by the registry from the participating units and stored in a secured database. |
Governance of the ANZIPTR registry is undertaken by the registry secretariat based at Westmead hospital under contract from the Australian Organ and Tissue Authority | Quality improvement initiative - Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973 |
|
Nil |
Nil |
New South Wales
South Australia
Victoria
New Zealand
|
|
| ACSQHC-ARCR-320 | Fetal and Neonatal Alloimmune Thrombocytopenia | Neonatal critical care | Neonatal Alloimmune Thrombocytopenia Registry | NAIT Registry | Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu |
2009 | The Neonatal Alloimmune Thrombocytopenia (NAIT) Registry is a register of women who develop or have a history of NAIT, and their children, both before and after birth. The registry captures data on the presentation, treatment and clinical outcomes of this rare condition. Individual NAIT patients require considerable support, with high diagnostic needs and high transfusion requirements, often with special products. The NAIT registry was established to address evidence gaps in the treatment, management and outcome of Australian NAIT cases, and to support hypothesis-driven research in this area. Patients who have been diagnosed with (and/or managed as suspected) NAIT are eligible for inclusion in the registry. They may be identified by treating clinicians from participating hospitals or registry staff, or based on laboratory data provided by the Australian Red Cross Blood Service. Patients may also identify themselves to the registry. Patients are not excluded unless they choose to ‘opt-off’ the registry, as explained in the study brochure and opt-off information. Routinely collected information in the diagnosis and treatment of NAIT is entered into a web-based data collection form. Clinical data collection is undertaken by clinicians and some laboratory data by the Blood Service. Data management and analysis is undertaken by the Monash University Department of Epidemiology and Preventive Medicine. |
Monash University | Monash Health Human Research Ethics Committee Reference: HREC/56750/MonH2019-186606(v1) |
|
Nil |
Nil |
Australian Capital Territory
Victoria
New South Wales
Queensland
Northern Territory
Western Australia
South Australia
Tasmania
|
|
| ACSQHC-ARCR-322 | Breast device surgery | Nil | The Australian Breast Device Registry | ABDR | 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 |
|
BREAST-Q Implant Surveillance module (BREAST-Q IS) |
Nil |
https://www.abdr.org.au/about-us/participating-sites/ Victoria
Western Australia
Australian Capital Territory
Tasmania
Northern Territory
New South Wales
South Australia
Queensland
|
|
| ACSQHC-ARCR-325 | Trauma | Trauma | Victorian State Trauma Registry | VSTR | Professor Belinda Gabbe, Monash University, belinda.gabbe@monash.edu |
2001 | The 1999 Review of Trauma and Emergency Services (ROTES) report recognised that an effective trauma system requires formal monitoring and feedback processes. It recommended a state trauma registry be established to ascertain the effectiveness of the system and to provide ongoing monitoring of major trauma patients. The Victorian State Trauma System (VSTS) was introduced to improve the delivery of trauma care in this state. The Victorian State Trauma Registry (VSTR) has enabled monitoring and analysis of the VSTS to critically review trauma care across the state with the aim of reducing preventable deaths and permanent disability from major trauma. |
Department of Health (Victoria) | Department of Health (Victoria) HREC 11-14 | Feedback to health services through Department of Health (Victoria) Case Review Group and State Trauma Advisory Committee. |
The registry monitors collects PROMs at six, 12 and 24 months following injury.
|
Nil |
https://www.monash.edu/__data/assets/pdf_file/0011/1402121/VSTORM_Contributing-Health-Services.pdf Victoria
|
|
| ACSQHC-ARCR-330 | Prostate cancer | High burden cancers | Prostate Cancer Outcomes Registry - Victoria | 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 |
|
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/ Victoria
|
|
| ACSQHC-ARCR-332 | Trauma | Trauma | South Australian Trauma Registry | SATR | Nil |
Helen Thomas, Prevention and Population Health Directorate Wellbeing SA, Helen.Thomas2@sa.gov.au |
2018 | The South Australian Trauma Registry collects information on all cases of major trauma admitted to the Royal Adelaide Hospital, Flinders Medical Centre, Women’s and Children’s Hospital and the Lyell McEwin Hospital. The information collected includes injuries sustained, mechanism of injury, details of care received including transfer (from injury scene to a hospital and between hospitals) and patient outcome. Data is extracted from SA Ambulance Service, MedSTAR, the clinical record and hospital systems which provide medical imaging and pathology reports. Reports from the SATR inform service providers about the quality of health care on a continuous basis in the different registry sites. The information is reported in various ways to the trauma clinical teams and is used to better understand opportunities for quality improvement. Clinical Indicator reports, published twice a year, bring together data from each of the hospital sites in addition to the production of ad hoc reports. Data from the SATR is also collated and reported (de-identified) to the Australian Trauma Quality Improvement Program led by Monash University (under an ethics agreement). |
Department for Health and Wellbeing (SA) | Quality Improvement Initiative, authorised under Section 64 of the South Australian Health Care Act 2008 |
|
Currently no collection of any post-discharge outcome measures on trauma patients in South Australia thus the SATR does not include any Patient Reported Outcome Measures (PROMs) |
The SATR does not report on patient reported experience measures (PREMS). All patient reported experiences for SA Health are recorded via the patient feedback platform on the Safety Learning System (SLS) |
All four major metropolitan hospitals in South Australia participate in contributing data to the SA Trauma Registry which includes:
|
| ACSQHC-ARCR-341 | End Stage Kidney Disease | Adult critical care | Australia and New Zealand Dialysis and Transplant Registry | ANZDATA | Kylie Hurst, ANZDATA Registry, South Australian Health and Medical Research Institute, kylie@anzdata.org.au Stephen McDonald, ANZDATA Registry, South Australian Health and Medical Research Institute, anzdata@anzdata.org.au |
1977 | The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) is a clinical quality registry that collects and produces a wide range of statistics relating to the outcomes of treatment of those with end stage kidney disease (ESKD). ANZDATA has been in operation since 1977 (but contains data from precursor registries dating back to 1963). All renal units in Australia and New Zealand contribute data to ANZDATA. The Registry’s fundamental purpose is to report on the incidence, prevalence and outcomes of dialysis and transplant treatment for patients with ESKD, by providing information that is complete, accurate, clear, relevant, readily available and timely. Data from the Registry is regularly used to inform clinical practice, monitor quality of clinical care, plan health services, and conduct research projects. |
South Australian Health and Medical Research Institute |
|
Pilot program and registry Clinical Trials underway currently using EQ5D |
Nil |
https://www.anzdata.org.au/?s=contributing+unit&data-group=anzdata Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
||
| ACSQHC-ARCR-342 | Bone Marrow Transplant and cell therapy | High burden cancers | Australasian Bone Marrow Transplant Recipient Registry | ABMTRR | Leonie Wilcox, St Vincent's Hospital Sydney,leonie.wilcox@svha.org.au |
1992 | The purpose of the ABMTRR is :
|
Bone Marrow Transplantation Society of Australia and New Zealand (professional)/ St Vincent's Hospital Sydney (operational) | St Vincent’s Hospital HREC: LNR/14/SVH/41 |
|
To be collected initially for cell therapy patients, with potential to include transplant patients in the future |
Nil |
http://www.abmtrr.org/index.php/centres/ New South Wales
Queensland
Victoria
South Australia
Western Australia
Tasmania
Australian Capital Territory
New Zealand
|
|
| ACSQHC-ARCR-346 | Cardiac healthcare, commencing with Percutaneous Coronary Intervention | Ischemic heart disease | National Cardiac Registry | NCR | Kelly Tapley/Michaela O’Regan, Project Manager, National Cardiac Registry, Monash University, info@nationalcardiacregistry.org.au |
2019 | The National Cardiac Registry (NCR) is a clinical quality registry that collects information on patients receiving treatment for cardiac conditions via state/territory-based cardiac registries. The purpose of the NCR is to document outcome variance and opportunities for excellence in the quality of cardiac health care across Australia. In 2021 data collection commenced across number of state/territories and as it matures the following objectives will be realised. Objectives:
The NCR will be rolled out in modules, each covering different areas of cardiac healthcare. The first module covers Percutaneous coronary intervention (PCI). The quality indicators for PCI are:
|
National Cardiac Registry Limited | Alfred Health Ethics Committee 63109 (Local Reference: Project 59/21) |
|
Nil |
Nil |
https://nationalcardiacregistry.org.au/participating-registries/ The NCR utilises a federated model of governance and data collection. Data is submitted to the NCR by participating cardiac registries across Australia. Currently there are cardiac registries established in the Australian Capital Territory, New South Wales, Queensland, South Australia and Victoria. Tasmania is working with Victoria’s registry to submit data. The Northern Territory and Western Australia are currently developing their registries.
|
|
| ACSQHC-ARCR-351 | Out-of-Hospital Cardiac Arrest | Ischemic heart disease | Australian Resuscitation Outcomes Consortium (Aus-ROC) Australian and New Zealand Out-of-Hospital Cardiac Arrest Epistry | Aus-ROC OHCA Epistry | Janet Bray, Monash University, janet.bray@monash.edu |
2015 | The Aus-ROC OHCA Epistry aims to monitor and report on the population-based effects of changes in pre-hospital resuscitation policy and practice. Specifically, understanding regional, ambulance service and treatment factors associated with improved OHCA survival and outcomes. Population: all OHCA cases attended by Australian and New Zealand ambulance services. Outcomes: survival to hospital discharge/30 days, event survival and return of spontaneous circulation (ROSC). |
Monash University | Monash University Human Ethics Committee ref: #13933 |
|
Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
|
| ACSQHC-ARCR-353 | Infertility and its treatment | Nil | Australian and New Zealand Assisted Reproduction Database | ANZARD | Jade Newman, National Perinatal Epidemiology and Statistics Unit, University of New South Wales, jade.newman@unsw.edu.au |
2002 | The Australia and New Zealand Assisted Reproduction Database (ANZARD) is a Clinical Quality Registry (self-reported) comprising information on all assisted reproductive technology (ART) treatment cycles and donor insemination cycles undertaken in Australian and New Zealand fertility clinics. Over 90 fertility clinics submit data to the National Perinatal Epidemiology and Statistics Unit (NPESU) each year as part of their licensing requirements under the Reproductive technology Accreditation Committee (RTAC) Code of Practice. ANZARD includes information on in vitro fertilisation (IVF) cycles, including intracytoplasmic sperm injection (ICSI) cycles using fresh and cryopreserved (frozen) embryos, and laboratory techniques such as preimplantation genetic testing and extended embryo culture. Demographic details on female and male patients, include age and infertility diagnosis and duration, parity, intending parent status etc. Treatment details include details of the ART cycles performed and treatment, pregnancy and birth outcomes. The purpose of the ANZARD collection is to inform patients, the medical community and governments about ART treatments performed in Australia and New Zealand. An ANZARD annual report is published each year as part of the Annual Report Series available on the NPESU website. Annual reports cover treatment practices, success rates and perinatal outcomes for all ART treatments performed in one calendar, along with an analysis of recent trends. ANZARD is also used to benchmark the performance of clinics nationally, and provides a rich source of data for undertaking research and informing public policy. ANZARD data is used to populate the YourIVFSuccess website (www.yourivfsuccess.com.au), a consumer facing website of IVF success rates of Australian IVF clinics and individualised patient estimates. |
University of New South Wales | Jurisdictional health information arrangement |
|
Nil |
Nil |
For a current list of all RTAC accredited IVF clinics in Australia and New Zealand, please visit https://www.fertilitysociety.com.au/code-of-practice/#copanz |
|
| ACSQHC-ARCR-355 | Trauma | Trauma | Royal Perth Hospital Trauma Registry | Nil | https://www.rph.health.wa.gov.au/Our-services/Trauma-Service |
Maxine Burrell, Trauma Services, Royal Perth Hospital, maxine.burrell@health.wa.gov.au |
1995 | The Trauma Registry at Royal Perth Hospital (RPH) has been collecting data on trauma patients since August 1994 and the database now contains more than 110,000 trauma admissions. For the purposes of the Registry, trauma is defined as “an injury or wound resulting from an external force” (Miller and Keane, 1983). The criteria for inclusion into the registry are:
The Registry population is divided into major and minor trauma admissions according to the Injury Severity Score (ISS). Major trauma admissions are those patients who have an ISS of greater than 15. An extensive dataset is collected on these patients, from the time of trauma to discharge from RPH, including pre RPH treatment. Minor trauma admissions are those patients who meet the registry inclusion criteria and have an ISS of less than 16. A limited dataset is collected on these patients. From January 2017, a moderate dataset on patients with an ISS >12 and <16 is now collected, in order to meet the reporting requirements of the Australian Trauma Registry. |
Royal Perth Hospital | Quality improvement initiative - a databank of routinely collected health data. |
|
Nil |
Nil |
Western Australia
An automated data collection process utilising administrative (ICD-10) data will soon be implemented in order to capture all Western Australian trauma admissions that do not attend hospitals participating in trauma registries. |
| ACSQHC-ARCR-362 | Clinical cardiology and cardiac services | Ischemic heart disease | Queensland Cardiac Outcomes Registry | QCOR | William Vollbon, Statewide Cardiac Clinical Informatics, Queensland Health, scciu@health.qld.gov.au |
2014 | The Queensland Cardiac Outcomes Registry (QCOR) provides detailed information on the performance of clinical cardiac care provided to patients across all Queensland public health facilities. The registry also examines outcomes across a number of specialty areas including, interventional cardiology, cardiac and thoracic surgery as well as cardiac electrophysiology and pacing. QCOR also collects data on the care and outcomes of patients referred to heart failure support services or undergoing a cardiac rehabilitation program. |
Queensland Health | Jurisdictional health information arrangements is the mechanism for obtaining agreement by participating sites to provide information |
|
|
Nil |
Queensland
|
|
| ACSQHC-ARCR-365 | Paediatric Orthopaedics | Musculoskeletal disorders | The SOHO Registry: Standardising Orthopaedic Healthcare Outcomes | SOHO | Nil |
Eleanor Morris, The Children’s Hospital, Westmead, eleanor.morris@health.nsw.gov.au |
2019 | The aim of the SOHO registry is to collect patient reported outcome measures (PROMs) amongst children with paediatric orthopaedic conditions attending The Children's Hospital at Westmead. The outcome measures collected are tailored to the individual orthopaedic diagnoses. Currently included diagnoses are:
PROMs are completed at baseline, 6 and 12 months and then on an annual basis ongoing. |
The Orthopaedic Department - The Children's Hospital at Westmead | Sydney Children’s Hospital Network HREC 2018/ETH00563, 2018/STE00429 | Feedback to contributing clinicians |
|
Nil |
The Children’s Hospital, Westmead |
| ACSQHC-ARCR-369 | COVID-19 | Maternity | Coronavirus Health Outcomes in Pregnancy and Newborns | CHOPAN | Clare Whitehead, The Royal Women's Hospital, clarew@unimelb.edu.au |
2020 | The CHOPAN registry aims to collect real-time data on pregnant women who are infected with the coronavirus that causes COVID-19 (SARS-CoV2) to improve our understanding of its impact on pregnancy and neonatal outcomes. This registry will provide regular feedback to clinicians and public health officials to allow evidence-based management of women and their babies with coronavirus infection. This registry was developed by Australian clinicians in collaboration with international colleagues in order to maximise its value to the global community. The aims of the registry are to:
|
University of Melbourne | Monash Health HREC: Reference RES-20-0000-215A |
|
Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Victoria
|
|
| ACSQHC-ARCR-371 | Congenital hand and upper limb differences | Nil | Australian Hand Difference Register | 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:
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 |
|
Nil |
Nil |
New South Wales
Queensland
South Australia
Western Australia
|
|
| ACSQHC-ARCR-373 | Renal Cell Carcinoma treated with Stereotactic Ablative Radiotherapy (SABR) | Nil | International Radiosurgery Oncology Consortium for Kidney Prospective Registry | IROCK Registry | Nil |
Associate Professor Shankar Siva, Peter MacCallum Cancer Centre, shankar.siva@petermac.org |
Although surgery is the standard of care for primary renal cell carcinoma (RCC), many patients in this population have comorbidities that may preclude them from having the necessary procedure. The International Radiosurgery Oncology Consortium for Kidney (IROCK) will collect high quality, prospective data from patients who undergo stereotactic ablative radiotherapy (SABR) for primary RCC. The primary purpose of the IROCK registry is to evaluate oncological outcomes after delivery of SABR to primary kidney cancer. This will assist oncologists and future patients make evidence-based decisions about treatment options. Findings may also change the standard of care of patients for patients with RCC. The IROCK registry collects information about patient characteristics and medical history; clinical data relating to cancer diagnosis and staging; renal score and function; details of the SABR treatment administered; organ at risk and toxicity information; patterns of failure data and documentation of endpoints. Follow-up data is collected every 6 months after SABR. The registry will also document novel combinations of systemic targeted agents and/or immunotherapies to establish their ability to enhance the effectiveness of the SABR technique. Given the projected increase in RCC globally, a better understanding of treatment options is pressing. The potential of SABR as a suitable treatment option for RCC in several patient cohorts therefore warrants further research, making the collection of data via a high quality, international, prospective registry essential. |
Peter MacCallum Cancer Centre | Peter MacCallum Cancer Centre HREC/80137/PMCC-2021 | Results of the data analysis will be published in medical journals as appropriate |
Nil |
Nil |
Victoria
International Canada
Germany
Japan
Netherlands
United States of America
|
|
| ACSQHC-ARCR-380 | Huntington's Disease | Nil | Huntington's Disease Network of Australia Map-HD Registry | HDNA Map-HD Registry | Julie Stout, Monash University, Julie.Stout@monash.edu |
2021 | The Map-HD Registry is a collection of data about people in Australia who are affected by Huntington’s disease (HD). All family members of people affected by HD are encouraged to register, whether or not they are at risk themselves. The Map-HD Registry is needed to:
|
Monash University (Stout Lab) | Monash Health HREC Reference: RES-20-0000-887A | Reported in Annual Report - shared with all HD clinics and HD state associations. |
Nil |
Nil |
New South Wales
Queensland
South Australia
Victoria
Western Australia
|
|
| ACSQHC-ARCR-387 | Systemic Lupus Erythematosus | Nil | Australian Lupus Registry and Biobank | ALRB | Alberta Hoi, Monash University, Alberta.hoi@monash.edu |
2015 | Systemic Lupus Erythematosus (SLE) is a heterogeneous, systemic, autoimmune condition, typically associated with autoimmunity to nuclear antigens. The predominant population affected are women of child-bearing potential, though children, older females and males are also affected. SLE patients experience increased morbidity and mortality due to their disease and the side effects of available treatment options including corticosteroids and immunosuppressive treatments. The Australian Lupus Registry and Biobank (ALRB) is a disease registry and decentralised biobank that aims to provide a platform for lupus specialists and researchers to collaborate in the collection of clinical data and tissue from SLE patients in Australia and carry out associated studies to further understand the pathogenesis and impact of SLE, including studies assessing health outcomes and quality of care. The comprehensive data collection includes baseline information on patient demographics, serology, SLE classification criteria and comorbidites; routine disease monitoring information including medications, medical test results and SLE disease activity; and, annual monitoring of outcomes including medical events of interest, damage accrual and health-related quality of life. Biospecimens collected include whole blood for DNA extraction, Paxgene-stabilised whole blood for RNA analyses and serum samples for protein expression studies. Fresh blood collections of up to 60 mL of blood at any one time point are also possible for ethically-approved studies. |
Monash University | Monash Health HREC Project Reference 14262A |
|
Adult patients:
Paediatric patients:
|
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Victoria
|
|
| ACSQHC-ARCR-388 | Surgical intervention for arthritis, tendon or ligament rupture of the shoulder, hip and knee | Musculoskeletal disorders | QEII Jubilee Hospital Shoulder, Hip Arthroplasty and Knee Surgery registry | SHArKS | Nil |
Lorenzo Calabro, Queen Elizabeth II Jubilee Hospital, Metro South Health, QLD Health, lorenzo.calabro@health.qld.gov.au |
2017 | The Queen Elizabeth II Jubilee Hospital’s Shoulder, Hip Arthroplasty and Knee Surgery (SHArKS) registry began in 2017 as a single-surgeon database, and has evolved to include patients presenting to one of several participating surgeons in the department of orthopaedics. The aim of the SHArKS registry is to facilitate the collection of patient-reported outcomes and compilation of data from across the entire department, to evaluate the current standard of care and inform evidence-based changes in clinical practice. |
Department of Orthopaedics, QEII Jubilee Hospital, Metro South Health, Queensland Health | Metro South Health HREC/16/QPAH/732 |
|
Each registry cohort completes up to eight of the following PROMs, depending on presenting pathology:
|
Nil |
Queensland
|
| ACSQHC-ARCR-392 | Paediatric cardiac catheter patients | Nil | The Cardiac Catheter Outcomes Registry of Australia and New Zealand | CCORANZ | No website at present |
Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au |
The registry is not yet operational and is currently being developed | This registry has been developed to collect prospective data regarding outcomes following cardiac catheterisation in Australia and New Zealand. The goal of the registry is to use the comprehensive data collected to evaluate performance and identify areas for improvement. |
Queensland Health | Children’s Health Queensland Human Research Ethics Committee Approval ID HREC/2021/QCHQ/71922 |
Planned:
|
Nil |
Nil |
New South Wales
Queensland
South Australia
Victoria
Western Australia
|
| ACSQHC-ARCR-396 | Orthopaedic Trauma | Trauma | Victorian Orthopaedic Trauma Outcomes Registry | VOTOR | Melissa Hart, Monash University, Melissa.hart@monash.edu |
2003 | The Victorian Orthopaedic Trauma Outcomes Registry was initially funded as a pilot project by the Victorian Trauma Foundation in 2003. It first started as a collaborative project between The Alfred, Royal Melbourne Hospital and the Department of Epidemiology and Preventive Medicine at Monash University. The registry was expanded to include the Geelong Hospital and the Northern Hospital in 2007. It operates as a sentinel site registry and is a comprehensive and robust monitoring system for orthopaedic trauma in Victoria. The overarching aims of the Victorian Orthopaedic Trauma Registry are to:
|
Monash University | Department of Health and Human Services HREC 11-14 |
|
|
Nil |
Victoria
|
|
| ACSQHC-ARCR-397 | Aplastic Anaemia | Nil | Aplastic Anaemia Registry | AAR | www.monash.edu/medicine/sphpm/registries/aar |
Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu |
2012 | The Aplastic Anaemia Registry was established in 2012, through a collaboration between the Transfusion Research Unit in Monash University’s Department 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 Registry is a clinical quality registry collecting health information on patients diagnosed with aplastic anaemia. Data collection is performed at baseline following diagnosis at 6-months and then annually and collects information on the following:
There are currently over 40 Australian hospitals participating in the registry with over 160 participants registered since the first patient data were entered in 2013. The registry is also being used as the data capture platform for the DIAAMOND clinical trial. |
Monash University | Monash University HREC: CF12/0423 - 2012000185 |
|
Nil |
Nil |
|
| ACSQHC-ARCR-398 | Prostate Cancer | High burden cancers | Prostate Cancer Outcomes Registry - Queensland | PCOR-QLD | Heather Day, Clinical Registry Manager, Queensland University of Technology, pcorqld@qut.edu.au |
2016 | PCOR-QLD focuses on describing patterns of care following a diagnosis of prostate cancer, monitoring quality of delivered care and whether it is in line with evidence-based guidelines. Population captured: PCOR-QLD is a population-based registry currently capturing 85 percent of all newly diagnosed cases of prostate cancer in Queensland. Outcomes measured: positive margin rate post prostatectomy, documentation of clinical stage, PSA recorded pre-diagnosis, post prostatectomy and 12 months post treatment, advanced disease and appropriate use of active surveillance, patient-reported quality of life measurements at 12 months post treatment or diagnosis (if no treatment has occurred). Notifications of prostate cancer are obtained from the Queensland Cancer Register for participating institutions and clinicians. Data is collected from public hospital medical records and private clinician's medical records. Data is collected by using a secure web-based portal. Data is collated and bench-marking reports are sent out every six months to participating institutions and clinicians. |
Monash University | MetroSouth HREC:HREC/15/QPAH/573 |
|
The Expanded Prostate Cancer Index Composite (EPIC-26) Short Form - a Quality of Life questionnaire. |
Nil |
https://prostatecancerregistry.org/whos-involved/ Queensland
|
|
| ACSQHC-ARCR-403 | Radiation Treatment | Cancer | Australian Particle Therapy Clinical Quality Registry | ASPIRE | Kelly Skelton, The Australian Bragg Centre for Proton Therapy and Research, kelly.skelton@sahmri.com |
2022 | The Australian Particle Therapy Clinical Quality Registry (ASPIRE) was initiated to collect participant data to describe the patterns of care for patients receiving conventional Xray therapy (Photon) versus Proton Beam therapy (PBT) as part of ongoing government funding of PBT. Current Medicare Benefits Schedule (MBS) items exist for some paediatric, adolescent and rare adult tumours to be treated with PBT. A lack of evidence reporting the long-term side effects of photon versus PBT means there is a recognised disparity in equity of access to PBT for other tumour types. The ASPIRE registry is a prospective, observational, longitudinal study of paediatric, adolescent, young adult (AYA) and rare adult tumour patients from a select group of tumour streams treated with radiotherapy, being those that are in the MBS approved list. The primary objective of the registry is to describe the long-term effects and disease control outcomes with a specific focus on side effects patients experience from their radiation treatment and the economic savings by improving radiotherapy side effects. |
South Australian Health and Medical Research Institute (SAHMRI) and The Australian Bragg Centre for Proton Therapy and Research (ABCPTR) | Women’s and Children’s Hospital HREC, 2021/HRE00394 |
|
Intention is to include this in the future |
Intention is to include this in the future |
South Australia
|
|
| ACSQHC-ARCR-406 | Cardio thoracic surgery | Ischemic heart disease | Australian and New Zealand Society of Cardiac and Thoracic Surgeons Database Program | ANZSCTS 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 |
|
Nil |
Nil |
Western Australia
South Australia
Victoria
Queensland
New South Wales
Australian Capital Territory
New Zealand
|
|
| ACSQHC-ARCR-416 | Neonatology | Neonatal critical care | Australian and New Zealand Neonatal Network | ANZNN | Sharon Chow, University of New South Wales Sydney, anznn@unsw.edu.au |
1995 | The Australian and New Zealand Neonatal Network (ANZNN) is a collaborative network that monitors the care of high risk newborn infants by pooling data to provide quality assurance for this resource consuming care. The Network was established in 1994 under the recommendation of the National Health and Medical Research Council's (NHMRC) Expert Panel on Perinatal Morbidity. Since its establishment the Network has developed a minimum data set and implemented a data collection that monitors the mortality and morbidity of infants admitted to neonatal intensive care units across Australia and New Zealand. Every neonatal intensive care unit (NICU) in the two countries has been contributing data since inception. Today, participation extends to every special care unit in New Zealand, and an increasing number of Australian special care units. Every year, over 12,000 newborns are admitted to a participating neonatal unit in Australia and New Zealand and meet one or more of the following ANZNN registration criteria:
|
Australian and New Zealand Neonatal Network |
NSW Population & Health Services Research Ethics Committee (HREC/09/CIPHS/48) ACT Health HREC (ETH.11.09.1009) Child and Adolescent Health Service HREC (1767EP) Mater Health Services HREC (HREC/14/MHS/11) Mercy Health HREC (HREC R09/46) HREC of Northern Territory Department of Health and Menzies School of Health Research (09/100) Royal Brisbane & Women's Hospital HREC (HREC/09/QRBW/313) Royal Children's Hospital HREC (29130) Royal Women's Hospital HREC (09/52) Monash Health HREC (09315B) Townsville Hospital and Health Service (HREC/09/QTHS/122) Women's and Children's Health Network (HREC/2244/02/2019) Health and Disability Ethics Committees, NZ (MEC/10/13/EXP) |
|
Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
|
| ACSQHC-ARCR-420 | Prostate Cancer | High burden cancers | Prostate Cancer Outcomes Registry Australian Capital Territory | PCOR-ACT | Mirka Smith, Epidemiology Section, Preventive and Population Health, ACT Health Directorate, mirka.smith@act.gov.au |
2016 (includes men diagnosed from 1 July 2015) | The PCOR-ACT is the ACT branch of the PCOR-ANZ research project. The aim of the PCOR-ANZ is to improve the quality of care provided to men with prostate cancer. All men diagnosed with and/or treated for prostate cancer in the ACT who are eligible to take part in the registry are invited to participate. Information from the registry will be used to monitor the care provided to men with prostate cancer including type(s) of treatment, related complication(s), and both short- and longer-term outcomes of care. This information will be used to help identify whether any gaps exist in the service provision for men with prostate cancer. |
ACT Health Directorate | ACT HREC ETH. 9.15.178 and Calvary HREC 28-2015 |
|
EPIC-26 |
Nil |
Australian Capital Territory
|
|
| ACSQHC-ARCR-432 | Lung cancer | High burden cancers | Victorian Lung Cancer Registry | VLCR | Robert Stirling, Monash University, r.stirling@alfred.org.au |
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 |
|
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. |
Victoria
|
|
| ACSQHC-ARCR-433 | Primary Liver Cancer (Hepatocellular carcinoma) | Nil | Upper Gastrointestinal Cancer Registry – Primary Liver Module | UGICR – Primary Liver Module | Elysia Greenhill, Monash University, ugicr@monash.edu |
2021 | The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers. The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science. The primary liver module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the liver, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals. |
Monash University | National Mutual Acceptance Monash Health HREC: Reference 15482A Aboriginal Health and Medical Research Council of New South Wales HREC: Reference 1387/18 Cancer Council Victoria HREC: Reference 1611 |
Planned
|
PROMs is a future endeavour of this module. |
PREMs is a future endeavour of this module. |
National rollout planning underway |
|
| ACSQHC-ARCR-436 | Surgical Mortality | Nil | Australia and New Zealand Audit of Surgical Mortality | ANZASM | https://www.surgeons.org/research-audit/surgical-mortality-audits |
Helena Kopunic, Royal Australasian College of Surgeons, ANZASM.RACS@surgeons.org |
2001 | The Australian and New Zealand Audit of Surgical Mortality (ANZASM) is a group of regionally based surgical patient mortality audits identified as ACTASM (Australian Capital Territory), CHASM (NSW), NTASM (Northern Territory), QASM (Queensland), SAASM (South Australia), TASM (Tasmania), VASM (Victoria) and WAASM (Western Australia). The ANZASM is managed by the Royal Australasian College of Surgeons (RACS). Each of the regionally based audits is under the governance of the ANZASM, with the exception of the Collaborating Hospitals Audit of Surgical Mortality (NSW) which is managed by the NSW Clinical Excellence Commission and co-governed in collaboration with RACS. The ANZASM provides an independent peer-review mechanisms for surgeons, anaesthetists, gynaecologists, radiologists, ophthalmologists and oral and maxillofacial surgeons relating to patient deaths occurring in a hospital where: (a) the patient was under the care of a surgeon (surgical admissions), whether or not an operation was performed; or (b) the patient was under the care of a physician (medical and non- surgical admission) and there was surgical intervention. The ANZASM includes, but is not limited to: (a) notification of death by surgeon, anaesthetist, gynaecologist, radiologist, ophthalmologist, oral and maxillofacial surgeon, hospital or health system; (b) completion and review of relevant case form; (c) report to treating surgeon, anaesthetist, gynaecologist, radiologist, ophthalmologist, or oral and maxillofacial surgeon by assessing surgeon; (d) public reporting on aggregated data; (e) strategic and national review by the ANZASM Steering Committee; and (f) the making of recommendations and monitoring of the implementation of those recommendations. |
Royal Australasian College of Surgeons | Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973 |
|
Nil |
Nil |
Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
Papua New Guinea
Nauru
New Zealand
|
| ACSQHC-ARCR-438 | Multiple myeloma and related diseases | High burden cancers | Myeloma and related Diseases Registry | MRDR | 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:
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 |
|
Collect EQ-5D-5L |
Nil |
https://www.mrdr.net.au/about-us/participating-sites/ Australian Capital Territory
Victoria
New South Wales
Queensland
Northern Territory
Western Australia
South Australia
Tasmania
New Zealand
|
|
| ACSQHC-ARCR-439 | Out-of-hospital cardiac arrest | Ischemic heart disease | Victorian Ambulance Cardiac Arrest Registry | VACAR | https://www.ambulance.vic.gov.au/about-us/research/clinical-quality-registries-and-clinical-trials/ |
Dr Ziad Nehme, Ambulance Victoria, ziad.nehme@ambulance.vic.gov.au |
1999 | The VACAR is a clinical quality registry of all out-of-hospital cardiac arrest (OHCA) events in Victoria. The registry captures a comprehensive ‘roadside to recovery’ perspective of the OHCA patient, capturing over 150 data elements across the prehospital, hospital, and recovery journey. It is used extensively to improve systems-of-care for OHCA patients in Victoria and has been recognised internationally for its contribution to the evidence-base in resuscitation science. Registry data is collected from Triple Zero calls, Communication Centre dispatch records, Emergency Medical Services (EMS) patient care records, real-time CPR quality data from defibrillators, hospital medical records and from telephone interview of adult survivors at 12 months post-arrest. Hospital outcome data is supplemented by death records from the Victorian Registry of Births, Deaths and Marriages. The registry also collects information relating to the causes of death for OHCA patients from the National Coronial Information System (NCIS). Data for all OHCA patients attended by AV has been captured for over 120,000 patients since 1999. Data is collated in the registry based on an internationally agreed template for resuscitation registries (Utstein template). VACAR provides information for the assessment and benchmarking of EMS performance in relation to the treatment and outcomes of OHCA patients. In particular, a number of key performance indicators (KPIs) have been implemented, which are designed to measure the quality and safety of care. KPIs include ambulance response times, rate of successful defibrillation, CPR quality metrics (various), prehospital return of spontaneous circulation, event survival and survival to hospital discharge. |
Ambulance Victoria | Monash University HREC Project ID: 21046 Department of Health and Human Services Approval (QI initiative) Number 08/02 |
|
|
Nil |
Victoria
|
| ACSQHC-ARCR-441 | Head and Neck Cancer | High burden cancers | Australian Comprehensive Cancer Outcomes and Research Database Head and Neck Tumour Database | ACCORD Head and Neck Tumour | Nil |
David Wiesenfeld, Melbourne Health, David.Wiesenfeld@mh.org.au |
2007 | Records presentation, treatment and outcomes for patients at Melbourne Health with Head and Neck Cancer |
Melbourne Health | Melbourne Health HREC: 2005-198 |
|
Nil |
Nil |
Melbourne Health |
| ACSQHC-ARCR-447 | Patients with cardiac arrest, acute cardiac failure or acute respiratory failure requiring extracorporeal membrane oxygenation | Adult critical care | 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 |
|
EQ5D-5L, WHODAS 2.0, ADL, IADL, Modified Rankin Scale and MoCA Blind |
Nil |
Australian Capital Territory
New South Wales
Queensland
South Australia
Tasmania
Victoria
Western Australia
New Zealand
|
| ACSQHC-ARCR-451 | Systemic Sclerosis (Scleroderma) and variants | Nil | Australian Scleroderma Cohort Study | ASCS | Under development |
Maryam Tabesh, St Vincent’s Hospital Melbourne, maryam.tabesh@svha.org.au |
2007 | Scleroderma is a multisystem disease of unknown aetiology which has the highest disease-related morbidity and mortality of the autoimmune rheumatic diseases. The Australian Scleroderma Interest Group (ASIG) is a national collaboration of rheumatologists, with a special interest in improving the outcomes of patients with scleroderma. ASIG established the ASCS, a longitudinal observational cohort that provides a framework for clinical and laboratory research enabling collaborations with other Australian researchers and internationally. The primary objective of the ASCS is to enhance clinical care by increasing the rate of screening for scleroderma-related cardiopulmonary complications to allow earlier identification of patients at high risk, and institution of timely treatment. Other objectives include:
|
Australian Rheumatology Association | St Vincent's Hospital Melbourne HREC: Protocol No. HREC-A 020/07 |
|
|
Nil |
Australian Capital Territory
New South Wales
South Australia
Victoria
Western Australia
Tasmania
|
| ACSQHC-ARCR-454 | Out-of-hospital Cardiac Arrest (OHCA) | Ischaemic Heart Disease | NSW Ambulance Cardiac Arrest Registry | Nil | Nil |
Nicole Packham, NSW Ambulance, nicole.packham@health.nsw.gov.au |
2017 | The Registry includes all patients with out-of-hospital cardiac arrest (OHCA) who were attended by NSW Ambulance clinicians since 1 January 2017. The data collected from clinical and operational records describe the pre-hospital links in the cardiac arrest 'chain of survival' (the series of steps that gives patients the best chance of surviving an OHCA). Record linkage with the NSW Registry of Births, Deaths and Marriages provides data on survival and interviews with survivors at 12 examine quality of life. The key data fields are based on the Utstein template, which was developed to promote uniform presentation of OHCA survival data across different regions of the world. The outcomes measured are survival to hospital; survival at 30 days and quality of life at 12 months post arrest. Key aims include: to improve service-level performance and patient safety by enhancing the quality, accessibility and timing of the information that is available to clinical decision-makers; to support research that may inform OHCA guidelines; to measure the long-term impact of OHCA on patients’ quality-of-life and functional capacity and to participate in the Australian Resuscitation Outcomes Consortium (Aus-ROC). Au-ROC is an epistry (epidemiological registry) that combines and compares data from OHCA registries in Australia and New Zealand to increase the understanding of the intra-regional, ambulance service and treatment factors that are associated with improved OHCA survival and outcomes. |
NSW Ambulance | NSW Population & Health Services Research Ethics Committee 2019/ETH00229 |
|
Quality of life measures via telephone interviews at 12 months |
Nil |
Not applicable |
| ACSQHC-ARCR-456 | Emergency Laparotomy | Nil | Australian and New Zealand Emergency Laparotomy Audit – Quality Improvement | ANZELA-QI | Kimberley Penglis, The Royal Australasian College of Surgeons, anzela-qi@surgeons.org |
2018 | The outcomes of patients undergoing emergency laparotomy are measured by assessing the care provided against specified key performance indicators (KPIs). The KPIs include but are not limited to: the presence of consultants or other specialists, preoperative reports of CT scans and postoperative admission to critical care. The ANZELA-QI aims to:
|
The Royal Australasian College of Surgeons (RACS) | South Metropolitan Health Service Human Research Ethics Committee Reference:RGS0000000848 |
|
Nil |
Nil |
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
|
|
| ACSQHC-ARCR-461 | Colorectal Cancer | High burden cancers | Bowel Cancer Outcomes Registry | BCOR | Hayat Dagher, Colorectal Surgical Society of Australia and New Zealand, contact@bowelcanceraudit.com |
2007 | The Bowel Cancer Outcomes Registry (BCOR) is a Clinical Quality Registry established by the Colorectal Surgical Society of Australia and New Zealand (CSSANZ). It was started as a clinical audit and is a surgeon-led surgical audit applicable to all surgeons who perform colorectal cancer surgery. The BCOR is governed by a collaboration of invested parties (CSSANZ, RACS, NZAGS, GSA, and consumers) and contains over 43,000 treatment episodes. BCOR data is used for clinical audit of the surgical practices of Australian and New Zealand surgeons for the purpose of quality assurance. The audit also works towards creating a large dataset containing Australian and New Zealand data that can be used for research and quality improvement purposes, with the aim of advancing knowledge and understanding of treatment for colorectal cancer. By creating this dataset BCOR will be able to identify areas pertinent to patient safety, identify benchmarks and identify sites that may be performing outside the common bounds of the larger group. Patients 18 years or older undergoing resection or treatment for colorectal cancer are recruited by surgeons at participating public and/or private hospitals in each Australian Jurisdiction and New Zealand via an opt out consent approach. BCOR collects information on patient and tumour characteristics, colorectal cancer management, complications of treatment, and clinical quality indicators relating to quality of surgical and hospital care. |
Colorectal Surgical Society of Australia and New Zealand | Monash Health HREC/17/MH/242 |
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Nil |
Nil |
https://www.bowelcanceraudit.com/contributors Australian Capital Territory
New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
New Zealand
|
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| ACSQHC-ARCR-467 | Diabetes | Diabetes | Australasian Diabetes Data Network | ADDN | Meng Tuck Mok, Australasian Diabetes Data Network, info@addn.org.au |
2012 | The Australasian Diabetes Data Network (ADDN) is a prospective, longitudinal diabetes registry collecting clinical data from people living with diabetes when they attend paediatric and adult diabetes centres. A primary of goal of ADDN is to undertake benchmarking to compare diabetes health outcomes across diabetes centres in Australasia. Benchmarking reports provided to all participating diabetes centres enable critical analysis of their data integrity, which can then be used to identify gaps in their organisation’s processes and enables sharing or standardisation of best practice. The dataset can therefore further our understanding of the influence of different management practices and therapies for diabetes, and the clinical and demographic predictors of clinical outcomes. The core data, collected routinely at clinic visits, include demographic characteristics, body mass index, glycated haemoglobin (HbA1c), blood pressure, lipids, diabetic ketoacidosis, hypoglycaemia, insulin therapy (injections or pumps), use of continuous glucose monitoring (CGM), diabetes complications and co-morbidities. ADDN also follows young people as they transition from paediatric services into adult care and therefore can describe the longitudinal trajectory of type 1 diabetes across the lifespan. |
Australasian Paediatric Endocrinology Group and Australian Diabetes Society | Monash Health Human Research Ethics Committee (RES-20-0000-066L) Hunter New England Human Research Ethics Committee (HREC/08/HNE/379) Melbourne Health Human Research Ethics Committee (HREC/16/MH/139) Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/09/QRCH/68/AM04) Women's and Children's Health Network Human Research Ethics Committee (REC1048-06-2019) The Royal Children’s Hospital Human Research Ethics Committee (37124 (amendment 37124D)) South Metropolitan Health Service Human Research Ethics Committee (RGS0000000176) Child and Adolescent Health Service Human Research Ethics Committee (2013051EP) Northern A Health and Disability Ethics Committee (NTX/12/EXP/076/AM03) University of Otago Ethics Committee (HD18/098) |
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Nil |
Nil |
New South Wales
Queensland
South Australia
Victoria
Western Australia
New Zealand
|
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| ACSQHC-ARCR-470 | Anaesthetic obstetrics | Maternity | Anaesthetic Benchmarking System - Obstetrics | ABS-Obstetrics | Karen Hamilton, Healthcare Improvement Unit, Clinical Excellence Queensland, Karen.Hamilton@health.qld.gov.au |
2018 | ABS – Obstetrics is a web-accessible data collection tool designed to capture anaesthetic obstetric clinical information within the labour (maternity) and perioperative environments. The ABS – Obstetrics is clinician driven and has been developed to assist hospitals and health services to achieve clinical practice improvement and provide safer and more satisfying experiences for mothers and babies by:
Agreed statewide indicators (based on the Royal College of Anaesthetists, audit recipe of continuous improvement) include: Epidural:
Caesarean:
|
Healthcare Improvement Unit, Clinical Excellence Queensland | ABS-Obstetrics is a quality assurance initiative established in accordance with the National Health and Medical Research Council 'Ethical Considerations in Quality Assurance and Evaluation Activities' 2014, Hospital and Health Boards Act 2011, Section 150 - Disclosure for purposes relating to health services and eHealth Architectural and Standard Committee requirements. |
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Nil |
Nil |
Queensland
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| ACSQHC-ARCR-471 | Inflammatory arthritis: (rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA) and juvenile idiopathic arthritis (JIA) | Musculoskeletal disorders | Australian Rheumatology Association Database | 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 |
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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. |
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| ACSQHC-ARCR-477 | Liver and intestinal disease | Nil | Australia and New Zealand Liver and Intestinal Transplant Registry | ANZLITR | 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:
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Austin Health | Monash Health Ref: RES-19-0000612A ERM Reference Number: 55535 |
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Nil |
Nil |
Victoria
New South Wales
Queensland
Western Australia
South Australia
New Zealand
|
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| ACSQHC-ARCR-480 | Bronchiectasis | Nil | Australian Bronchiectasis Registry | ABR | https://lungfoundation.com.au/research/our-research/bronchiectasis/ |
A/Prof Lucy Morgan, Macquarie University, abr@lungfoundation.com.au |
2015 | The Australian Bronchiectasis Registry (ABR) was established in 2015 by Lung Foundation Australia (LFA) and the Australasian Bronchiectasis Consortium (ABC), an independent steering committee composed of Australia’s and New Zealand’s leading respiratory physicians with experience, interest and skill in both clinical management and research. The principal aim of the registry is to identify and collect longitudinal health information on patients with non-cystic fibrosis bronchiectasis in order to facilitate epidemiological research, improve clinical care and maximise opportunities for patients to participate in clinical trials. The registry has international collaborations with US, European and New Zealand researchers to build on the existing evidence base, leverage knowledge, expertise, protocols, and ideas in order to optimise research outcomes through international sharing of data. |
Lung Foundation Australia | HREC/15/CRGH/225,Sydney Local Health District Concord Repatriation General Hospital HREC |
|
QoL-B, Bronchiectasis Health Questionnaire (BHQ) is pending inclusion in upcoming data dictionary update |
Nil |
New South Wales
Victoria
Queensland
South Australia
Western Australia
Northern Territory
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| ACSQHC-ARCR-483 | Gynaecological Malignancies | High burden cancers | The National Gynae-Oncology Registry | NGOR | Registry Manager, Monash University sharnel.perera@monash.edu |
2017 | The National Gynae-Oncology Registry (NGOR) is a multi-modular clinical quality registry (self-reported) which aims to record diagnostic, treatment and outcome data of patients with newly diagnosed gynaecological cancers. This information is used to monitor and minimise variation in care, improve patient outcomes, and identify trends and potential gaps in service provision. The NGOR was developed by a group of likeminded clinicians in collaboration with the Cancer Research Program in Monash University’s School of Public Health and Preventive Medicine in 2017. The NGOR finalised a list of quality indicators for endometrial cancer module, which was piloted in Victoria and Tasmania. The registry is in the process of developing quality indicators for additional registry modules covering cancers of the endometrium, cervix, vulva and vagina. The Ovarian Cancer Registry (OvCR), a sub-registry of the NGOR, has two active modules for ovarian, tubal and peritoneal cancer, and rare ovarian tumours. A Patient Reported Outcome Measures (PROMs) pilot began at the end of 2022, which aims to test the feasibility and acceptability of a bespoke patient reported outcome (PRO) and patient reported experience (PRE) tool developed through clinical and consumer consultation. The NGOR is endorsed by the Australian Society of Gynaecologic Oncologists (ASGO), >40 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, South Australia, Tasmania, Western Australia, Queensland with sites to be added in the Australian Capital Territory 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 | Annual Reports
OvCR Quarterly Visual Data Reports Provide a visual summary of each health services data in the NGOR’s database
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Nil |
Nil |
Victoria
New South Wales
Western Australia
South Australia
Tasmania
Queensland
|
|
| ACSQHC-ARCR-485 | Cardiac Surgery | Ischeamic heart disease | International CardioCel Outcome Registry | ICOR | Nil |
Jessica Suna, Queensland Children's Hospital, Jessica.Suna@health.qld.gov.au |
2020 | A quality registry of perioperative surgical data from paediatric cardiac units using CardioCel, a tissue substitute used in the repair of cardiac defects. |
Queensland Health | Children’s Health Queensland Hospital and Health Service HREC Ref 18/QRCH/87 |
|
Nil |
Nil |
New South Wales
Queensland
Victoria
Western Australia
International
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| ACSQHC-ARCR-486 | Pelvic Floor Procedures, Devices | Nil | Australasian Pelvic Floor Procedure Registry | APFPR | Joanne Dean, Monash University, apfpr@monash.edu |
2019 | The Australasian Pelvic Floor Procedure Registry (APFPR) is a clinician-led national clinical quality registry. The APFPR commenced operations early in 2021 with the stress urinary incontinence (SUI) mesh procedure module and is recruiting patients from participating hospitals. The pelvic organ prolapse (POP) mesh procedure module is expected to be rolled out in early 2022. Both clinician and patient reported outcomes are collected by the registry. The registry has been set up to increase the safety of procedures that utilse medical devices such as pelvic mesh and monitor quality of care. The APFPR will collect data relating to pelvic floor disorder diagnosis, surgery details and intra and post operative complications of implantation, revision and explantation procedures. Additional data items will be collected for risk adjustment purposes. |
Monash University | National Mutual Acceptance Scheme Reference 63247 and Monash Health HREC Reference: RES-20-0000-444A |
First annual report due in 2022 |
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Nil |
New South Wales
South Australia
Victoria
|
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| ACSQHC-ARCR-496 | Joint replacement surgery | Musculoskeletal disorders | Barwon Joint Registry | BJR | 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 |
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Nil |
Victoria
|
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| ACSQHC-ARCR-504 | Orthopaedic Joint Replacement | Musculoskeletal disorders | Australian Orthopaedic Association National Joint Replacement Registry | AOANJRR | Cindy Turner, South Australian Health & Medical Research Institute, cturner@aoanjrr.org.au |
1999 | The AOANJRR is a national Quality Improvement Program to audit the outcome of joint replacement in Australia. It is an initiative of the Australian Orthopaedic Association (AOA) and is permanently funded by the Commonwealth Government. It was established in 1999 and is listed as a Declared Quality Assurance Activity under section 124X of the Health Insurance Act 1973 (QAA 3/2017). The specific objectives are:
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Australian Orthopaedic Association | Declared Quality Assurance Activity under the Commonwealth Health Insurance Act 1973 Part VC |
|
Standard PROMs collected by the AOANJRR pre-operative and 6 months post-operative
Additional PROMs for Registry Nested Clinical Trials
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Nil |
Australian Capital Territory
Victoria
New South Wales
Queensland
Northern Territory
Western Australia
South Australia
Tasmania
|
|
| ACSQHC-ARCR-63 | Neuroendocrine Cancer | Cancer | Planning of treatment and research for Neuroendocrine tumours (NETS) in Australia | PLANET Registry | Meredith Cummins, NeuroEndocrine Cancer Australia, meredith@neuroendocrine.org.au |
2018 | The PLANET registry is a data repository for clinical information for patients with neuroendocrine tumours (NET). It is a system designed to facilitate the exchange of information about NET patients between clinical professionals, and provides mechanisms to collect valuable information for research, and further studies. NeuroEndocrine Cancer Australia, in collaboration with the eResearch department at Melbourne University, have developed this world class NET registry and mobile app designed to securely house NET data in one location. |
Neuroendocrine Cancer Australia | HREC/18/PMCC/142; Peter MacCallum HREC |
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|
Nil |
New South Wales
Queensland
South Australia
Victoria
Western Australia
|
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| ACSQHC-ARCR-66 | ST-elevation Myocardial Infarction | Cardiac | Victorian Ambulance STEMI Quality Initiative | VASQI | Nil |
Natalie Heriot, Ambulance Victoria, natalie.heriot@ambulance.vic.gov.au |
2019 | Purpose: Ambulance Victoria (AV) is the state-wide emergency medical service for almost 6.6 million Victorian residents. Historically paramedic collected electronic patient care records are uploaded and stored in the AV clinical data warehouse and data are used to report on clinical quality improvement and audit, operational improvement, and for research and evaluation. ST-elevation myocardial infarction (STEMI) represents an important cohort needing additional time-critical monitoring, assessment and management to ensure optimal patient outcomes. AV has established the Victorian Ambulance STEMI Quality Initiative (VASQI) for this purpose. Aims: AV STEMI management has grown in complexity in recent years, including the service-wide rollout of pre-hospital 12-lead ECG, administration of aspirin and heparin, and pre-hospital thrombolysis in selected rural/remote patients. Assessing the quality and safety of these complex interventions is vital and it is the aim of VASQI to undertake these assessments, monitor safety and progress, provide vital feedback to the paramedic workforce and measure patient outcomes. Population: Eligible patients are those attended by AV and treated for a paramedic suspected STEMI. Outcomes: Monitor the quality and safety of treatment and procedures performed by paramedics on patients presenting with cardiovascular symptoms consistent with STEMI. This includes linkage with hospital treatment and outcome data which will form part of a feedback circle to assess accuracy of diagnosis. |
Ambulance Victoria | Monash University HREC (MU-HREC) Reference number: 13926 Alfred Health HREC Reference number: 597-19 |
|
Nil |
Nil |
Victoria
|
| ACSQHC-ARCR-696 | Interstitial Lung Disease | Nil | Australasian Interstitial Disease Registry | AILDR | https://www.sydney.edu.au/medicine-health/our-research/research-centres/aildr.html |
AILDR Project Manager, The University of Sydney, aild.registry@sydney.edu.au |
2016 | The Australasian Interstitial Lung Disease Registry (AILDR) recruits patients with all ILD subtypes, reflecting real world practice at clinics across Australia and New Zealand with dual objectives:
The AILDR was established in response to growing calls for a national clinical registry to better understand Interstitial Lung Disease patterns, standardise care and provide relevant longitudinal data. Commencing with four pilot sites in 2016, there are now 23 sites participating across Australia and New Zealand with more than 3000 participants recruited and followed-up regularly every 6 months. Inclusion criteria for participants includes age 18 years of age, ability to provide written informed consent, and diagnosis of ILD according to American Thoracic Society/European Respiratory Society (ATS/ERS) criteria. The core data recorded on the registry includes: - Basic demographic data - Clinical data - Medications - Oxygen use - Pulmonary function tests - Other Investigations. |
The University of Sydney | Sydney Local Health District HREC reference: X16-0275 & 2019/ETH06440 | Feedback to contributing clinicians |
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Nil |
New South Wales
Queensland
South Australia
Victoria
Western Australia
New Zealand
|
| ACSQHC-ARCR-99 | Cardiothoracic Surgery/Cardiopulmonary Bypass | Ischaemic heart disease; Adult critical care | The Australian and New Zealand Collaborative Perfusion Registry | ANZCPR | Rob Baker, Flinders Medical Centre, rob.baker@sa.gov.au |
2005 | A collaborative project conducted to improve patient outcomes and foster and grow high quality research by the establishment and maintenance of a prospective database of cardiac surgical procedures performed in centres throughout Australia and New Zealand. Vision: Empower all cardiac surgery team members to improve the understanding and practice of cardiopulmonary bypass to improve cardiac surgical patient outcomes. Mission: Maintain and develop the Australian and New Zealand Collaborative Perfusion Registry for cardiac surgical procedures performed throughout Australia and New Zealand. Promote the reporting and understanding of the effect of cardiopulmonary bypass on patient outcomes through encouraging evidence based practices, quality assurance, quality improvement and research. Aims:
Objectives: ANZCPR aims to empower cardiac surgical team members through the collection and reporting of data relevant to the practice of cardiopulmonary bypass. This will be achieved through the maintenance of a prospective data set on cardiac surgical procedures performed in multiple sites throughout Australia and New Zealand and through the collaborative network of perfusion and interested researchers, who share the commitment to cooperation and collaboration in the pursuit of excellence in perfusion. |
ANZCPR Steering Committee | Southern Adelaide Clinical Human Research Ethics Committee HREC/15/SAC/341 |
|
Nil at this time, under review for inclusion |
Nil at this time, under review for inclusion |
New South Wales
South Australia
Tasmania
Victoria
New Zealand
|