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 Guidelines have been developed by the CRE in Patient Safety and is of relevance to people interested in understanding how to develop or maintain a clinical registry.
• The Registry booklet was developed 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 USDRS"
  

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)
• 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

Registries Interest Group

The purpose of the Registry Interest Group is to provide an informal forum in which people affiliated with clinical registries can discuss issues relating to any aspect of registry operation: including but not limited to issues relating to governance, management, information technology, ethics, funding, and models for improvement. It provides an opportunity to registry custodians, epidemiologists, project managers, database managers and statisticians to present work they are doing or ask for input from other people working with registries. It also builds relationships and fosters a collegial and collaborative approach to work in this area.

In addition to representatives from registries housed within the DEPM, other registry custodians particiapting in the Registry Interest Group are associated with the following registries or organisations:

• VICNISS
• ANZICS
• ANZDATA
• Spleen Registry
• Australia and New Zealand Burn Association Pty Ltd (ANZBA) National Burns Registry Upgrade
• Chronic Disease Registry
• Australian Red Cross Blood Service

Membership, meetings and meeting presentations for 2008 include:

• Membership
• Meetings for 2008
• Registry Interest Group presentations: At each Registry  Interest Group meeting, speakers are invited to discuss  aspects of registry interest to them or to talk more specifically about their own registry.
  

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