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

• Published in: Journal of public health (Oxford, England) England), 2006-06, Vol.28 (2), p.148-156
• Main Authors: Surman, Geraldine, Bonellie, Sandra, Chalmers, James, Colver, Allan, Dolk, Helen, Hemming, Karla, King, Andy, Kurinczuk, Jennifer J., Parkes, Jackie, Platt, Mary Jane
• Format: Article
• Language: English
• Subjects: Adolescent; Cerebral palsy; Cerebral Palsy - epidemiology; Cerebral Palsy - etiology; Cerebral Palsy - mortality; Cerebral Palsy - physiopathology; Child; Child, Preschool; Collaborative approach; collaborative research; Cooperative Behavior; Epidemiology; Health Services Needs and Demand; Humans; Infant; Medical research; Registries; UKCP; United Kingdom - epidemiology
• ISSN: 1741-3842; 1741-3850
• DOI: 10.1093/pubmed/fdi087

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 2.0 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.