An international survey of cerebral palsy registers and surveillance systems

Abstract

AIM-To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration.METHOD-Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted.RESULTS-Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration.INTERPRETATION-Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.Correspondence to Shona Goldsmith, Cerebral Palsy Alliance, PO Box 6427, Frenchs Forest, NSW 2086, Australia. sgoldsmith@cerebralpalsy.org.au. A list of contributors is given in Appendix S1 (online supporting information). SUPPORTING INFORMATIONAdditional supporting information may be found in the online version of this article: Appendix S1: List of contributors. The purpose of this survey was to describe CP surveillance programmes and identify similarities and differences across topics of importance for the relevance and sustainability of, and collaboration between, surveillance programmes. It is anticipated that results will (1) encourage and inform those establishing new programmes about the methods and data items collected by existing programmes; (2) inform health professionals and researchers of the existence of national and international surveillance programmes and the potential for population-based research and data linkages; and (3) assist existing surveillance programmes to investigate the potential for future collaborations. HHS Public Access METHODRepresentatives from 38 surveillance programmes were contacted by e-mail and invited to participate in the online survey. Surveillance programmes were identified by the study authors, and all participants were encouraged to forward the survey link to any other known surveillance programmes.The survey, developed and constructed by the study authors, was available online via 'Survey Monkey' (https://www.surveymonkey.com) for 4 weeks in June to July 2014. Seventy-one questions related to issues of governance and fundin...