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Journal of Public Health Advance Access published online on March 23, 2006
Journal of Public Health, doi:10.1093/pubmed/fdi087
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© The Author 2006, Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved

Article

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

Geraldine Surman 1 *, Sandra Bonellie 2, James Chalmers 3, Allan Colver 4, Helen Dolk 5, Karla Hemming 6, Andy King 1, Jennifer J. Kurinczuk 1, Jackie Parkes 7, and Mary Jane Platt 8

1 National Perinatal Epidemiology Unit, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK
2 Applied Statistics Group, Dept of Mathematics, Merchiston, Napier University, 10 Colinton Rd, Edinburgh EH10 5DT, UK
3 Information and Statistics Division, Gyle Square, South Gyle Crescent, Edinburgh EH12 9ED, UK
4 University of Newcastle upon Tyne, Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Rd, Newcastle-upon-Tyne NE1 4LP, UK
5 Room 1F08 Faculty of Life and Health Sciences, University of Ulster at Jordanstown, Shore Rd, Newtownabbey, Co. Antrim BT37 0QB, UK
6 University of Warwick, Coventry, UK
7 NICPR, Room 1.36 Mulhouse Bldg, The Queen’s University of Belfast, Institute of Clinical Sciences, Belfast BT12 6BJ, UK
8 Division of Public Health, School of Population, Community and Behavioural Sciences, University of Liverpool, Liverpool, UK

* To whom correspondence should be addressed.
Geraldine Surman, E-mail: geraldine.surman{at}npeu.ox.ac.uk


  Abstract

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.

Keywords: cerebral palsy, collaborative research, epidemiology, UKCP.
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