UKCP: a collaborative network of cerebral palsy registers in the United Kingdom.

Journal article

Cerebral palsy (CP) is a relatively rare condition with enormous social and financial impact. Information about CP is not routinely collected in the United Kingdom. We have pooled non-identifiable data from the five currently active UK CP registers to form the UKCP database: birth years 1960-1997. This article describes the rationale behind this collaboration and the creation of the database. Data about 6910 children with CP are currently held. The mean annual prevalence rate was 2.1 [corrected] per 1000 live births for birth years 1986-1996. Where type is known, 91 per cent have spastic CP. Where data are available, nearly one-third of children have severely impaired lower limb function, and nearly a quarter have severely impaired upper limb function. As well as describing the range and complexity of motor and associated impairments, the pooled data from the UKCP database provide a platform for studies of aetiology, long-term outcomes, participation and service needs. The UKCP database is an important national resource for the surveillance of CP and the study of its epidemiology in the United Kingdom.

Authors: Surman, G; Bonellie, S; Chalmers, J; Colver, A; Dolk, H

• Publication status: Published
• Journal: Journal of public health (Oxford, England)
• Volume: 28
• Issue: 2
• Pages: 148-156
• Publication date: 2006-06-01
• DOI: 10.1093/pubmed/fdi087
• EISSN: 1741-3850
• ISSN: 1741-3842
• Language: English
• Keywords: Humans; Health Services Needs and Demand; Child; Cooperative Behavior; Infant; Adolescent; Registries; Cerebral Palsy; Child, Preschool; Great Britain