The Australia and New Zealand Clinical Quality Registry for the Treatment of Eating Disorders (TrEAT Registry) supports clinical outcomes monitoring and reporting for people receiving eating disorders treatment. Participating services including private and public outpatient, day program, and residential eating disorder treatment centres in Australia and New Zealand. Clients at these services complete patient reported outcome measures before and throughout treatment. A feedback mechanism is employed whereby summaries of scores with norming data are sent immediately to clinicians to guide clinical decision-making. Service-wide reports are generated and benchmarked against the pooled registry data across services. Researchers use the registry to answer questions about eating disorder phenomenology and treatment. The TrEAT Registry captures clients aged 13 years and older, and all participating clients/caregivers provide informed consent for the use of their data to be included in the database for auditing and research purposes.

The objective of the registry is to provide a platform for participating sites to enter data to measure post-operative quality of recovery after a surgical procedure. These data will be used to answer multiple research questions in the future, as well as to provide benchmarking data for recovery for specific operations. Specific research questions that will utilise the registry data will require separate HREC approval. The primary outcome measure tool is the Postoperative Quality of Recovery Scale (PostopQRS).

The Tasmanian Emergency Care Outcomes Registry is a clinical quality registry (self-reported) that aims to monitor the quality of clinical care provided by Tasmanian Emergency Departments. The primary objective for determining the quality of clinical care is by measuring 30-day mortality and safety event data (morbidity).

The Australasian Registry of Electrocardiograms in National Athletes (ARENA) is a clinical quality registry (self-reported). ARENA collects cardiac screening data for athletes over the age of 16 years, including ECGs and results of other cardiac tests from sporting organisations in Australia and New Zealand. It is led by researchers at the University of Sydney, in collaboration with other national and international experts, and based at the South Australian Health and Medical Research Institute (SAHMRI) Registry Centre. ARENA was launched in 2023, initially in Australia, with New Zealand to follow as funding allows. All sporting organisations conducting cardiac screening of athletes (including ECG) are eligible to provide data. Outcomes and diagnoses will be monitored regularly. 

ARENA will provide a long-term international data repository to improve our understanding of ECG interpretation, cardiac screening and diagnoses, and the rates of major cardiac events in screened athletes. A unique aim is to address important evidence gaps in under-represented athlete groups, specifically female athletes and Indigenous populations. Results will inform policy and guidelines. The overall aim is to improve the quality of their cardiac screening programs and provide better cardiac care for young athletes.

LUCAP is a clinical quality registry (self-reported) for lung cancer care in Australia. The platform enables the performance of continuous audit cycles against endorsed key clinical quality indicators (CQI) of care to identify where significant improvements can be made to deliver consistent, world-class care. The type of information LUCAP collects includes: 

• how quickly people get tests
• what sort of tests are performed
• how quickly people get treatments. 

Ultimately, LUCAP aims to improve the quality of care and outcomes for lung cancer patients in Australia by developing a culture of accountability and responsibility in institutions that treat lung cancer in Australia. 

The key objectives of LUCAP are to: 

• Implement a standardised and high quality data collection process across all jurisdictions in Australia
• Enable the generation of risk-adjusted reports on the quality of lung cancer care across Australia for consumers, healthcare providers and researchers, and provide close-to real time dashboards to facilitate clinical and quality improvement initiatives
• Enable the generation of high-quality research data for observational and/or registry-based studies, facilitating and enhancing novel research and new treatment approaches for lung cancer patients. 

LUCAP is currently being implemented in the hospitals listed below, with the intention to expand to all hospitals across Australia (and New Zealand) in the future. LUCAP is supported by Cancer Australia and the peak lung health body the Lung Foundation Australia (LFA). The LUCAP Protocol is endorsed by the Thoracic Society of Australia and New Zealand (TSANZ).

The purpose of the Registry is the collection of outcome and safety data on the use of transcranial magnetic stimulation (TMS) and other brain stimulation techniques. The Registry will include any patients receiving TMS who are referred by their treating physician and consent to participate in data collection. The Registry will expand to include other brain stimulation techniques in the future. The outcomes measured will depend on their diagnosis. 

The Australian Diabetes Foot Registry standardises data collection in High Risk Foot Services (HRFS) nationally, providing an unprecedented opportunity for audit, benchmarking, quality improvement and collaborative research. HRFS deliver specialist interdisciplinary care to people with diabetes-related foot complications, including ulceration, osteomyelitis and Charcot foot. These services are established to reduce the healthcare and individual burden of diabetes-related foot complications by coordinating care, reducing hospitalisation and improving clinical outcomes. However, prior to establishment of the ADFR, siloed and often insufficient data collection practices impeded comprehensive outcome evaluation. With introduction of a national HRFS Standards and Accreditation program by the National Association of Diabetes Centres, the need for national data collection, centralised support and infrastructure to meet quality improvement standards was recognised. The primary objective of the ADFR is to develop a standardised Australian diabetes repository for HRFS. Secondary objectives are to evaluate service and clinical outcomes, perform national benchmarking, provide reports to participating services, and establish a platform for local and collaborative research. Data is prospectively and longitudinally collected on people with diabetes and one or more active foot complications attending a participating HRFS. The project has ethics approval under the National Mutual Acceptance Scheme with an opt-out consent approach (waiver of consent in WA and NT). Data and outcome domains span participant demographics, diabetes characteristics, comorbidities, ulceration characteristics and classification, Charcot foot characteristics and classification, referral processes, telehealth utilisation, interdisciplinary involvement, offloading practices, antibiotic prescription, hospitalisations, surgical interventions including amputation, service wait times, remission and recurrence of complications, and service separation.

The purpose of the AIPPAP Research Registry is the collection of outcome and safety data on the use of novel interventional pharmacotherapy approaches, including ketamine treatment and psychedelic-assisted psychotherapy for mental health disorders. The AIPPAP Research Registry will include any patients receiving MDMA, psilocybin, or ketamine who are referred by their treating physician and consent to participate in data collection. The outcomes measured will depend on their diagnosis.

This project aims to make use of a Learning Health System (LHS) approach towards the creation of a virtual clinical quality registry called The Lily Registry. The Lily Registry will include all patients with eating disorders identified as medically unstable upon admission to hospital, where instability is secondary to the eating disorder. The Lily Registry will enable excellence in inpatient care of people with medical complications of eating disorders by supporting best-practice multi-disciplinary care and continuous quality improvement.

The National Transfusion Dataset (NTD) will form the first integrated national database of blood usage in Australia. The NTD aims to collect information about where, when, and how blood products are used across all clinical settings. This will address Australia’s absence of an integrated national database to record blood usage with the ability to link with clinical outcomes. The dataset is an invaluable resource towards a comprehensive understanding of how and why blood products are used, numbers and characteristics of patients transfused in health services, the clinical outcomes after transfusion; and provides support to policy development and research.               

The NTD was formed through the incorporation of the established Australian and New Zealand Massive Transfusion Registry (ANZ-MTR) and a pilot Transfusion Database (TD) project. The ANZ-MTR has a unique focus on massive transfusion (MT) and contains over 10,000 cases from 41 hospitals across Australia and New Zealand spanning 2011-2018. The TD was a trial extension of the registry that collated data on ALL (not just massive) transfusions on >8000 patients from pilot hospitals. The NTD integrates and expands these databases to provide new data on transfusion practice, using novel approaches to collect data on clinical outcomes. The NTD will link datasets of blood utilisation including prehospital, clinical and registry, with the aim of closing the vital haemovigilance loop. The population captured include all patients (≥18 years old) transfused any type of blood product, and all blood donors (≥18 years old), at participating health services or organisations, from 2017 onward.

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:

• To provide a valuable resource for high quality ILD research
• To improve care for ILD patients across Australia and New Zealand.

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 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.

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.