The Danish Cerebral Palsy Registry - A registry on a specific impairment

Cerebral palsy (CP) is the commonest disabling impairment in childhood, wit h a prevalence of 2-3 per 1000 live births. The Danish Cerebral Pals Regist ry is a research registry that contains cases of CP from birth year 1925 an d has estimated the birth prevalence since 1950. Data on children with CP a re collected from paediatric departments and one special institution for di sabled children. The children are included by a child neurologist and an ob stetrician, and information on pregnancy. birth, neonatal period, impairmen ts and demographic data on the child and mother are registered in a standar d form. The uptake area is eastern Denmark, covering about 50% of the popul ation, but the rest of Denmark is planned to be included from 2001. The Reg istry is large, well established and validated, and the definitions and col lection procedures have not changed through several decades. It therefore h as great research potential. Birth prevalence is estimated continuously, an d changes over time are analysed and correlated with pre- and perinatal con ditions. A correlation between increased survival of preterm babies and an increased prevalence was found previously, and a decreased prevalence in ve ry preterm infants was later associated with less use of mechanical ventila tion. A study correlating CP and maternal infection is ongoing, Collaborati on between 14 European CP registries allows the true differences in prevale nce between different countries to be studied. Linkage to other individuall y based registries in Denmark will allow the social consequences of CP to b e described.