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.

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.

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.

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.