Clinical registries collect and manage longitudinal patient data for analysis and descriptive reporting, including feedback to treating centres for quality management (clinical quality registries). Registries are a practical solution to information needs that cannot be met from administrative or official data collection systems. They are especially useful for information about low prevalence diseases and for monitoring outcomes for groups of patients undergoing specific medical procedures.
Clinical quality registries are increasingly recognised as contributors to identification of ‘best practice’ treatments, especially where there is variation in treatments and outcomes across centres. A growing body of literature is addressing the benefits of ‘benchmarking’ exercises conducted using registry data. An article by appearing in the magazine The New Yorker in December 2004, (Garawande, ‘The Bell Curve’), gives a good account of early experiences for clinicians and patients and has perhaps contributed to the emergence of transparent reporting of outcomes of treatment at individual centres (for instance see websites of the US Cystic Fibrosis Foundation and Cystic Fibrosis Australia).
Australian Clinical Registries manages the Australian Cystic Fibrosis Data Registry, a clinical quality registry, on behalf of Cystic Fibrosis Australia. See the cystic fibrosis page on this site for information.
The Australian Government has invested significantly in the development of operating principles and technical standards for clinical quality registries, through a project undertaken by the Australian Commission on Safety and Quality in Health Care in conjunction with the National E-Health Transition Authority (see information the ACSQHC website). From this work, Australian Health Ministers endorsed in 2010 a set of Strategic and Operating Principles for Australian Clinical Quality Registries. A national approach to strategic quality registries is expected to follow.
A good introduction to clinical registries operating in Australia can be found on the website of Monash University’s Centre for Research Excellence in Patient Safety (CREPS). CREPS maintains a registry of Australian clinical registries, coordinates a registries interest group, and makes presentations from the group’s meetings available via its website.
Australian Clinical Registries, through its parent organisation Geoff Sims Consulting, contributed in 2010 to evaluating the trial implementation of draft Operating Principles and Technical Standards for Australian Clinical Quality Registries. With its experience of registry management, Australian Clinical Registries is well placed to provide practical advice to organisations undertaking the review or establishment of a clinical quality registry in accordance with Australian principles. Contact Us for further information.