The Australian National Child Hearing Health Outcomes Registry (ANCHOR) is a national Learning Health System designed to collect, connect, and analyse child hearing health information to improve outcomes for deaf and hard of hearing children across Australia. ANCHOR aims to generate robust, population-level evidence to inform service delivery, policy, and equity of access, while embedding community engagement and lived experience at the core of registry design and governance. ANCHOR has three primary aims: (1) to map Australia’s child hearing health services and datasets and determine the costs of establishing and maintaining a national registry; (2) to create a cross-state linked data system, commencing in Victoria and Queensland, as a scalable blueprint for national extension; and (3) to develop and implement a nationally agreed Core Outcome Set that measures outcomes that matter to children, young people, families, and services. The registry population includes children who are deaf or hard of hearing and who engage with hearing health, early intervention, education, and related support services. In its initial phase, ANCHOR will include linked data from Victoria and Queensland, selected due to the presence of large, established statewide child hearing datasets. These data span the continuum of care, including newborn hearing screening, audiological diagnosis, hearing device provision, early intervention, education, and family support services. All registry processes are being designed to support future expansion to additional jurisdictions. Outcomes measured include clinical, developmental, educational, and psychosocial outcomes, as defined by the Core Outcome Set, alongside service-level indicators such as timing and type of intervention, access to services, and care pathways. ANCHOR operates under robust data governance aligned with FAIR principles, using secure, privacy-preserving data linkage methods, and is intended to support national scalability and broader application to other paediatric Learning Health Systems.

PRELUDE is a prospective, multi-site observational pilot registry study designed to assess the feasibility, utility, and epidemiological value of a perioperative anaphylaxis registry in Queensland. This data set will support pharmacovigilance and evidence based anaesthetic drug selection, as well as resource planning and workforce development at both the state and national levels. 

PRELUDE will: 

• Establish current incidence rates of perioperative hypersensitivity reactions, and calculate the rate of hypersensitivity per anaesthetic procedure
• Identify implicated drug classes, and calculate the rate of hypersensitivity per drug exposure
• Report severity of reactions
• Assess current management of reactions against guidelines
• Develop and refine a minimum registry dataset suitable for national adoption
• Integrate data collection into existing clinical workflows
• Monitor patient inclusion and consent rates
• Assess data quality and clinician engagement
• Estimate operational and financial requirements for national rollout.

This two-phased study will investigate health outcomes for women aged 18 or older living in Australia. These studies aim to understand the impact of women’s health variables specifically relating to hip pain and to investigate treatment approaches for women with endometriosis and pelvic pain. Primary women’s health study: Women will be invited to complete a 20-minute online survey collecting women’s health variables. This questionnaire collects information including sociodemographic data, safety when exercising, general health, gynaecological health, pelvic floor health, pregnancy, menopause symptoms, musculoskeletal pain, mental health including both depression and anxiety, physical activity and health related quality of life. Women who report pain between their waist to mid-thigh will be asked additional questions taking up to 10 minutes (total survey time 30 minutes). All Women who consent and complete the baseline survey will be emailed at 6- and 12-months to complete a 10-minute follow-up survey. Women’s hip sub-study: Participants reporting pain from the waist to mid-thigh region may be eligible to participate in a secondary study investigating women with hip pain. Participants will complete baseline testing taking up to 60 minutes. This includes physical testing, and some participants will be offered hip radiographic imaging (x-ray). Testing will include hip muscle strength, hip range of motion, hip palpation, one leg rise and flexion-adduction-internal-rotation test. Participants will complete follow up surveys taking 10 minutes each at 6- and 12-month intervals online using REDcap.

The Australian Brain Cancer Registry (ABCR) was launched in 2025 by Brain Cancer Australia (BCA) as a national, population wide, clinical quality registry reporting on specific brain cancer Clinical Quality Indicators. The ABCR aims to promote timely access to optimal care, identify management practices associated with longest survival and in turn improve outcomes for patients. Automated, electronic data collection is used to collect data across Australia, using data linkage to gather information from diverse systems.

The registry will generate regular reports on treatment quality and outcomes. These will include publicly accessible, aggregated clinical data, and confidential, risk-adjusted data to contributors. The reports will provide valuable insights to healthcare providers, policymakers, and the public. The ABCR will support research by providing high-quality data to help advance medical knowledge and improve treatment practices.

The registry is managed by Cancer Alliance Queensland (CAQ). The operational model involves collaboration between BCA, CAQ, health departments, and state health data custodians. Registry operation and oversight is ensured by a Management Committee, Operations Committee, Data Management Committee, Research Committee, and Consumer Advisory Committee. These committees oversee the registry’s operations, data management, and research activities. The ABCR adheres to strict ethical guidelines and privacy laws to protect patient data. Ethics and governance approvals are sought for each jurisdiction, and data security is ensured by CAQ through robust data handling, storage, and oversight processes.

Penile cancer is a rare malignancy in Australia with an incidence of 0.6 in 100,000 men, and has high morbidity and mortality. It carries a significant burden of disease and psychosocial impact for men affected. There is a paucity of comprehensive local epidemiological data and management guidelines. The registry aims to address this gap by creating a centralised database to study local risk factors, treatment effectiveness, and outcomes. The APCR is a national, multicentre prospective study, utilising a combination of respective and prospective data. We focus on men above 18 years of age, who have been diagnosed or previously treated for penile cancer, including those with recurrences or on active surveillance. The primary objective is to establish a health-care provider based penile cancer clinical registry to improve the local evidence base, and bridge local and international interdisciplinary gaps. The primary outcome is to map demographic and tumour characteristics in Australia. Secondary outcomes include understanding HPV infection rates, analyse health disparities in management, and investigate long term outcomes of surgical interventions, lymph node interventions and chemotherapy for penile cancer.

The primary objective of this project is to establish a registry for adolescents and young adults with hip dysplasia to monitor their outcomes (with and without surgery) and to conduct research into causes and predictors of outcomes. All registry patients will have been referred to a surgeon with radiographic and symptomatic hip dysplasia, at a nominated site in Australia, are aged 10 to 55 years. Participants have had hip/groin pain for ≥ 3 months, primarily caused by hip dysplasia. The HOpE registry will record the patient’s demographics such as age, sex, postcode and hospital site. Patient reported outcome measures (PROMs) will also be used to assess pain, function and quality of life. These will be assessed at baseline, 6-months, 12-months and then annually. These include the Copenhagen Hip and Groin Outcome Score (HAGOS), EuroQol five-dimensions five-level (EQ5D5L), International Hip Outcome Tool (iHOT-12), Depression Anxiety Stress Scales (DASS-21), Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment Questions: SHP Version 2, Insomnia Severity Index (ISI), perceived global improvement in pain and additional questions regarding sport participation, expectations and use of analgesics. Surgical data will also be entered by team members. This will include fixation methods, concomitant procedures, use of bone graft, use of navigation assistance, and presence of hypermobility conditions. A cost-effectiveness evaluation of healthcare costs and health service use related to surgical interventions for hip dysplasia will inform future models of hip dysplasia care across the person’s lifespan.

Background: Durable mechanical circulatory support (dMCS) devices are an essential tool in the treatment of end-stage heart failure, used to prolong life and improve health so patients can be listed a heart transplant. These devices are only implanted in seven sites across Australia and New Zealand, and the numbers performed in each site are small. By joining sites' disparate information together, we can guide clinical practice and identify knowledge gaps. Aim: Collect clinical information on all patients in Australia and New Zealand who have end-stage heart failure and require durable mechanical circulatory support (dMCS) devices, and use this data to inform clinical practice and decision making. Study type: Prospective and retrospective observational longitudinal cohort study, a clinical quality improvement registry. Primary and secondary objectives: Identify and follow outcomes of patients who have a dMCS device implanted in Australia and New Zealand; Identify knowledge gaps for future research. Population: Approximately 75-90 patients a year. Inclusion criteria: Patients with a TGA-approved dMCS device (such as left ventricular assist devices, right ventricular assist devices, and total artificial hearts) implanted in Australia or New Zealand. Data collected: De-identified demographics, pre-implant cardiac, health, and QOL status, implant procedure, post-op stay, adverse events, follow-up, readmission, explant, transplant, and death details. Adverse events are infection, bleeding, neurological dysfunction, device malfunction, pump thrombus, haemolysis, right heart failure, renal dysfunction, and respiratory failure. The ANZMACS Registry contributes data to the International Mechanically Assisted Circulatory Support Registry (IMACS) run by the International Society for Heart and Lung Transplantation (ISHLT).

PHSANZ registry is a binational registry involving Australia and New Zealand. There are currently 25 sites participating in the registry. The registry collects data for patients with pulmonary hypertension (high blood pressure in the lungs). The aims of the PHSANZ registry include assessing the epidemiology of pulmonary hypertension, changes in treatment patterns, and outcome data. Outcome data includes compliance with guideline-directed therapies, survival with benchmarking against international registries, and geographical disparities in outcomes. The PHSANZ registry is also an important tool for patient advocacy and improving models of care.

The iTestis Registry is a national research and clinical quality registry focused primarily on testicular cancer (germ cell cancers of the testes), with additional inclusion of rare retroperitoneal and mediastinal germ cell tumours. The registry captures detailed demographic, clinical, treatment, and outcomes data from participating sites across Australia. It provides a structured, clinician-led platform that supports both continuous quality improvement in clinical care and national research initiatives using real-world data. The registry is governed by the iTestis Steering Committee and supported by ongoing oversight from medical oncologists and other specialists in testicular cancer. iTestis data are routinely used to monitor adherence to evidence-based practice, identify variations in care, and inform educational feedback to contributing centres. The registry also serves as a research platform, supporting national and international collaborations, registry-based studies, and functioning as the electronic case report form (eCRF) backbone for multicentre clinical cohort studies. With a dual focus on research and quality, the iTestis Registry provides a robust infrastructure for advancing understanding and improving outcomes in testicular and related germ cell cancers.

The ANZTHOR Registry serves as the principal quality registry for thoracic surgery in Australia and New Zealand. The aim of the ANZTHOR Registry is to improve the delivery and quality of thoracic surgery across Australia and Aotearoa New Zealand. ANZTHOR provides the necessary evidence base to determine the efficacy, safety and quality of thoracic surgery providers, interventions, devices and treatments.

The ANZ CHD Registry is an initiative designed to transform care for congenital heart disease (CHD) patients in Australia and New Zealand. This registry will become a comprehensive resource by enrolling over 70,000 CHD patients, encompassing all age groups. This data will quantify the lifelong impact of CHD and shed light on disease progression, current management strategies, and factors affecting health outcomes. The registry will further enhance estimates of CHD prevalence within the ANZ population and evaluate the effectiveness of CHD interventions. Ultimately, these insights will directly inform advancements in CHD care, resource allocation, patient education, and research priorities, aligning perfectly with the National Strategic Action Plan for CHD. This data-driven approach has the potential to revolutionize CHD care and significantly improve the lives of countless patients across Australia and New Zealand.