SCPE work, standardization and definition — An overview of the activities of SCPE: a collaboration of European CP Registers

Abstract:

The main aim of the Surveillance of Cerebral Palsy in Europe (SCPE) network was to develop a central database of cerebral palsy (CP) cases across Europe. Monitoring trends in prevalence rates of CP should contribute to collaborative studies on risk factors or quality of life for children living with CP. A multi-centre collaboration of CP registries used a clear definition of CP to accurately and consistently identify cases of CP. The rate of CP within the collaboration varied from 1.5 to 3 per 1 000 live births. For the birth cohort 1980 to 1996 (n=9 128), 53.9% of the CP children had a bilateral spastic cerebral palsy, 31.0% had unilateral spastic CP, 6.6% were dyskinetic and 4.1% ataxic. Among CP children, 20.4% had a birth weight less than 1 500g and 25.5% were born before 32 weeks gestational age. Intellectual impairment corresponding to an IQ<50 was found in 29.5% of CP children. The proportion of CP children unable to walk, even with aids, was 30.3%. Twelve and a half percent of CP children were known to have a severe visual impairment. It was concluded that registers are the best means to implement epidemiological research into CP.