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

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. T...

Full description

Saved in:
Bibliographic Details
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
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary: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.
ISSN:1741-3842
1741-3850
DOI:10.1093/pubmed/fdi087