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 fr

SUBMITTER: Goldsmith S 

PROVIDER: S-EPMC4837944 | biostudies-literature | 2016 Feb

REPOSITORIES: biostudies-literature