title: The cerebral palsy research registry: development and progress toward national collaboration in the United States.
abstract: Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad.
authors.affiliation: Department of Physical Therapy and Human Movement Sciences, Feinberg School of Medicine at Northwestern University, Chicago, IL, USA. d-hurley@northwestern.edu
authors.forename: Donna S
authors.initials: DS
authors.lastname: Hurley
authors.forename: Theresa
authors.initials: T
authors.lastname: Sukal-Moulton
authors.forename: Michael E
authors.initials: ME
authors.lastname: Msall
authors.forename: Deborah
authors.initials: D
authors.lastname: Gaebler-Spira
authors.forename: Kristin J
authors.initials: KJ
authors.lastname: Krosschell
authors.forename: Julius P
authors.initials: JP
authors.lastname: Dewald
mesh_terms: D002547:Cerebral Palsy / Q000453:epidemiology*; D002648:Child; D002675:Child, Preschool; D016208:Databases, Factual / Q000706:statistics & numerical data; D019988:Children with Disabilities; D005260:Female; D006801:Humans; D007391:International Cooperation; D008297:Male; D015995:Prevalence; D011446:Prospective Studies; D012042:Registries; D012106:Research / Q000706:statistics & numerical data*; D012720:Severity of Illness Index; D014481:United States / Q000453:epidemiology