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Cerebral palsy (CP) registers appear to be appropriate tools for answering questions regarding the prevalence and characteristics of this common childhood disability. Registers are population databases issuing from multiple sources, relying on a clear definition and inclusion and exclusion criteria of CP, and requiring a mix of skills with the collaboration of obstetricians, pediatricians, and epidemiologists. In Europe alone there are 18 different CP registers or population data collections on CP, and collaborative research efforts exist through a European network. Data collection on CP has also been done in Australia (register), the United States (surveys), and Canada (register). Beside monitoring trends, other public health contributions of CP registers might be to reduce the frequency of CP and to improve the quality of life of children with CP. CP registers are useful to clinicians by enabling them to identify subgroups of children requiring specific etiologic investigations, and also to provide more accurate information to the parents of children with CP.

Original publication

DOI

10.1016/j.spen.2004.01.004

Type

Journal article

Journal

Semin Pediatr Neurol

Publication Date

03/2004

Volume

11

Pages

18 - 23

Keywords

Cerebral Palsy, Child, Data Collection, Databases as Topic, Disabled Children, Europe, Humans, Infant, Newborn, International Cooperation, Population Surveillance, Prevalence, Registries, Retrospective Studies