title: An international survey of cerebral palsy registers and surveillance systems.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Cerebral Palsy Alliance, The University of Sydney, Sydney, NSW, Australia.
authors.forename: Shona
authors.initials: S
authors.lastname: Goldsmith
authors.affiliation: Cerebral Palsy Alliance, The University of Sydney, Sydney, NSW, Australia.|Telethon Kids Institute, University of Western Australia, Perth, WA, Australia.
authors.forename: Sarah
authors.initials: S
authors.lastname: McIntyre
authors.affiliation: Cerebral Palsy Alliance, The University of Sydney, Sydney, NSW, Australia.
authors.forename: Hayley
authors.initials: H
authors.lastname: Smithers-Sheedy
authors.affiliation: Telethon Kids Institute, University of Western Australia, Perth, WA, Australia.
authors.forename: Eve
authors.initials: E
authors.lastname: Blair
authors.affiliation: RHEOP-ThEMAS - Centre Hospitalier Universitaire de Grenoble, Grenoble Université, Grenoble, France.
authors.forename: Christine
authors.initials: C
authors.lastname: Cans
authors.affiliation: Telethon Kids Institute, University of Western Australia, Perth, WA, Australia.|Department of Health Western Australia, Perth, WA, Australia.
authors.forename: Linda
authors.initials: L
authors.lastname: Watson
authors.affiliation: Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA.
authors.forename: Marshalyn
authors.initials: M
authors.lastname: Yeargin-Allsopp
mesh_terms: D002547:Cerebral Palsy / Q000453:epidemiology*; D003625:Data Collection; D006801:Humans; D007391:International Cooperation; D011159:Population Surveillance / Q000379:methods*; D015995:Prevalence; D012042:Registries