The Impact of 40 Years of Data Collection: The Victoria Cerebral Palsy Register

Background: The Victorian Cerebral Palsy Register (VCPR) project collects information on all individuals born or living in Victoria since 1970. It is one of the largest cerebral palsy (CP) registers internationally, with over 6800 participants. Methods: This paper will explain how the VCPR was established, how data are collected and the main outcomes from its use over an extended period of time. Results: The knowledge generated through the VCPR has contributed to information about epidemiology including trends in prevalence over time, and rates and causes of death; the VCPR has been used to investigate causal pathways and potential avenues for prevention or amelioration. It has been valuable in identifying cohorts for multidisciplinary studies resulting in improved understanding of the management of associated problems. The VCPR has also been used in the development of measurement tools and has enabled data linkage studies contributing to knowledge about CP. Conclusion: The Register not only provides an efficient means of identifying eligible cohorts, but the population basis of the VCPR provides the ability to assess the generalisability of research cohorts and a means of adjusting for selection bias and potential misinterpretation of study results. The project has gained international recognition for the knowledge generated on prevalence, risk factors, mortality, clinical profiles, neuroimaging patterns, health service use, assessment tools, participation, epidemiology in paediatric orthopaedics, and quality of life. It has underpinned significant improvements in clinical care for children with CP by enabling researchers from diverse disciplines to complete 157 studies.