Clinical Registries

Clinical registries are databases that systematically collect health-related information on individuals who are:

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

Information in clinical registries is captured on an ongoing basis from a defined population. Clinical registries provide the most suitable and accurate method of providing monitoring and benchmark data and provide the greatest potential to improve healthcare performance across institutions and providers.

Reports and Publications

• The following Operating Principles and Technical Standards have been developed by the CRE in Patient Safety in collaboration with the Australian Commission on Safety and Quality in Health Care and the National eHealth Transition Authority (NeHTA) and is of relevance to people interested in understanding how to develop or maintain a clinical registry.
• A guide for Institutional Ethics Committees has been developed by the CRE in Patient Safety in collaboration with the Australian Commission on Safety and Quality in Health Care principally for use by administrators and Human Research Ethics Committees to provide guidance in understanding the purpose and function of clinical registries. It considers matters to be considered by Ethics Committee when a request for a registry is put before them.
• The Registry of Registries provides examples and attributes of Australian clinical registries including coverage, case ascertainment, information output, governance, funding and data quality processes.
• The following presentation given by Professor Allan Collins, Director of the US Renal Data System to an audience at Monash University in 2007 provides valuable advice on how to run a successful registry. " How to run a successful registry: Lessons from the USRDS"
• Funding for clinical quality registries - the Australian Cardiac Registry experience.

Department of Epidemiology and Preventive Medicine Registries

The CRE in Patient Safety is housed within the Department of Epidemiology and Preventive Medicine  (DEPM). The following participating registries are managed by or associated with the DEPM.

• ASCTS Database Project
• Australian Rheumatology Association Database (ARAD) Project
• Bosentan Patient Registry
• Haemostasis Registry
• Melbourne Interventional Group (MIG) Interventional Cardiology Registry
• Neonatal Alloimmune Thrombocytopenia Registry (NAIT)
• Pilot of a population-based prostate cancer clinical registry
• Pilot of a population-based lung cancer clinical registry
• REACH Registry
• Southern Melbourne Integrated Cancer Service Registry
• Surveillance of workplace Based Respiratory Events (SABRE)
• Thrombotic Thrombocytopenic Purpura Registry (TTP)
• Victorian Cardiac Arrest Registry
• Victorian Orthopaedic Trauma Registry
• VSTORM - Monitoring and Evaluation of the Victorian State Trauma System

Registry Special Interest Group

Registry Special Interest Group (SIG) information is now located on the Clinical Quality Registries in Australia website.  Please click on the following link for full details http://www.registries.org.au/registrysig.html.

People interested in joining the Registry Special Interest Group or hearing more about work being undertaken in the field of clinical registries should contact Sue Evans on sue.evans@monash.edu.