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The validity and reliability of the guidelines of the Surveillance of Cerebral Palsy in Europe (SCPE) for the classification of cerebral palsy (CP) were tested by administering 10 written case vignettes via an interactive web-based link to 30 SCPE partners. There was a moderately good level of agreement (j=0.59) about inclusion as a CP case on the SCPE database. Classification by CP subtype differed in two main areas: assigning spastic versus dyskinetic and judgement of distribution of spastic involvement. Agreement on Gross Motor Function Classification System (GMFCS) level was less good than reported in previous studies. Twenty respondents repeated the test 5 months later and there was good repeatability for case inclusion (j= 0.72) but considerable variation in assignment of CP subtype and GMFCS level. There is a need for further collaborative work and training to improve harmonization of the classification of CP, including examination, application of SCPE guidelines, and register coding.In 2000 the Surveillance of Cerebral Palsy in Europe (SCPE) reported the collaboration between cerebral palsy (CP) surveys and registers in 14 centres in eight countries.1 Consensus was reached on definition, inclusion ⁄ exclusion criteria, and classification of CP (see Appendix Ia and b, supporting information published online). The subtypes of CP are applied in a hierarchical manner using the predominant clinical features in the following categories: spastic (bilateral, unilateral), dyskinetic (dystonic, choreoathetotid, unclassifiable), ataxic, and unclassifiable. The purpose of the collaboration was to improve harmonization of data for monitoring rates of CP and to provide a framework for research and service planning. Subsequently, a central database was established and the prevalence of CP and characteristics of more than 6000 children with CP have been reported.2 However, the clinical validity and reliability of the guidelines have not been adequately assessed.The interobserver reliability of the SCPE guidelines and algorithm was evaluated in the Netherlands.3 Medical records of 57 children registered as having CP at a rehabilitation centre were reviewed by two medical students. Each case was classified as CP or non-CP with good agreement. The reviewers also had fair agreement about type of motor disorder and topographical distribution. The limitations were the small number of observers and the use of medical students who are not generally involved in such decisions in clinical practice. However, the study showed the potential for the SCPE guidelines to assist classification.

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.

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Increasingly, more very-low-birthweight infants in the developed world are now expected to survive the neonatal period than was previously the case. There are concerns that there may be a related increase in the number of infants developing severe sensorimotor impairments. Pooled data from five registers contributing to the UK Network of Cerebral Palsy Registers, Surveys and Databases were used to identify patterns of motor impairment in relation to additional impairments and to birthweight, and to assess whether prevalence of cerebral palsy (CP) by birthweight and by severity of motor impairment had changed over time. Low-birthweight infants are at greater risk of developing CP than larger-birthweight babies. The CP rate amongst children with birthweights <2500 g was significantly higher at 16 per 1000 livebirths [95% confidence interval (CI) 14.9, 16.2] than 1.2 per 1000 livebirths [95% CI 11, 1.2] for normal-birthweight children. Despite being at greater risk of developing CP, smaller-birthweight babies are proportionately less likely to develop the most severe forms of motor impairment. Of those born weighing > or = 2500 g, 23% compared with 15% weighing <1000 g (P < 0.001) were in the most severely motor impaired group. Severe motor impairment is associated with higher levels of additional impairments. CP rates for each motor impairment group in the 1990s were similar to those in the late 1970s. Rates of CP among infants born below normal birthweight are high but have decreased over time. The CP rate for infants weighing 1000-1499 g at birth decreased from around 180 per 1000 livebirths in 1979 to around 50 per 1000 livebirths from the early 1990s onwards.