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An international survey of cerebral palsy registers and surveillance systems
Author(s) -
Goldsmith Shona,
McIntyre Sarah,
SmithersSheedy Hayley,
Blair Eve,
Cans Christine,
Watson Linda,
YearginAllsopp Marshalyn
Publication year - 2016
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/dmcn.12999
Subject(s) - data collection , scope (computer science) , harmonization , cerebral palsy , descriptive statistics , inclusion (mineral) , identification (biology) , resource (disambiguation) , medicine , medical education , psychology , computer science , sociology , botany , mathematics , psychiatry , acoustics , biology , programming language , social science , social psychology , computer network , statistics , physics
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 .