Monash Clinical Registries

There is considerable global interest in identifying and using existing health data sets and systems to monitor the quality of medical care. The School of Public Health and Preventive Medicine has extensive experience in the establishment and maintenance of clinical registries. These registries collect an identical minimum data set from patients treated in multiple hospitals or clinics throughout the country. Consistency is ensured through the use of identical definitions and data collection procedures.

What are Clinical Quality Registries?
Clinical registries are databases that systematically collect health-related information within an overall governance and management structure on individuals who are:

  • treated with a particular surgical procedure, device or drug, eg. joint replacement;
  • diagnosed with a particular illness, eg. stroke; or
  • managed via a specific healthcare resource, eg. treated in an intensive care unit.

The Australian Commission on Safety and Quality in Health Care has developed key documents regarding the governance, operation and technical requirements of clinical quality registries: Operating Standards and Framework.

Types of clinical registries include:

Clinical quality registries: The primary purpose of a clinical quality registry is to monitor outcomes and report on quality of care. Quality indicators collected by clinical registries assess whether care is safe and effective and delivered in a timely and appropriate manner and report this back to institutions and/or clinicians. Clinical registries may monitor quality of care within specific areas of the health service, such as in Intensive care or the Emergency Department or may be targeted at monitoring defined diseases or conditions.

Condition / Disease registries: The primary purpose of a condition / disease registry is to collect diagnostic details on patients with specific diseases or conditions. Examples of these registries include those monitoring the incidence of cancer, or those monitoring incidence, treatment and outcomes of patients with cystic fibrosis. If a condition / disease registry collects outcome data and reports quality indicators  back to institutions and / or clinicians it would also be considered a clinical registry.

Drug / Device / Product registries: The primary purpose of a drug / device / product registry is to monitor the medium to long-term safety of devices, drugs or products such as blood. Examples of these registries include those monitoring safety of implantable devices such as pacemakers or breast implants. As with condition/disease registries, drug/device/product registries may also be considered clinical registries if they collect and report quality indicators back to institutions and/or clinicians.

For specific information about registries operating at the School, please click on the relevant link below. Those indicated with * fit into more than one category.

Clinical Condition / Disease Drug / Device
Australian and New Zealand Massive Transfusion Registry (ANZ-MTR)Australian Cystic Fibrosis Data Registry (ACFDR)Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) * 
Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) *Haemoglobinopathy Registry (HbR)Australian Rheumatology Association Database (ARAD)
Australian and New Zealand Thyroid Cancer Registry (ANZTCR)Lymphoma and Related Diseases Registry (LaRDR)Bariatric Surgery Registry (BSR)
Australian Rheumatology Association Database (ARAD)Myeloma and Related Diseases Registry (MRDR)Australian Breast Device Registry (ABDR)
Australian Trauma Registry (ATR)Neonatal Alloimmune Thrombocytopenia (NAIT)Melbourne Interventional Group Registry (MIG) * 
Burns Registry of Australia and New Zealand (BRANZ)Registry of Kidney Diseases (ROKD)Australian Spine Registry (ASR)
Melbourne Interventional Group Registry (MIG) *Thrombotic Thrombocytopenia Purpura (TTP)/Thrombotic Microangiopathies (TMA) registry 
Prostate Cancer Outcome Registry Australia and New Zealand (PCOR-ANZ)Venous Thromboembolism cohort study (VTE) 
Upper Gastrointestinal Cancer Registry (UGICR)  
Victorian Cardiac Outcomes Registry (VCOR)  
Victorian Lung Cancer Registry (VLCR) *  
Victorian Orthopaedic Trauma Outcomes Registry (VOTOR)  
Victorian Prostate Cancer Clinical Registry (PCR)   
Victorian State Trauma Registry (VSTORM)