title: Systematic Review of Cerebral Palsy Registries/Surveillance Groups: Relationships between Registry Characteristics and Knowledge Dissemination.
abstract: The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems.
  
  
  METHODS
  A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification.
  
  
  RESULTS
  Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors.
  
  
  CONCLUSIONS
  CP registries and surveillance programs, including novel non-traditional ones, have significantly contributed to the understanding of how CP affects individuals, families and society. Moving forward, the global CP registry/surveillance program community should continue to strive for uniformity in CP definitions, variables collected and consistency with international initiatives like the ICF so that databases can be consolidated for research use. Adaptation to new technologies can improve access, reduce cost and facilitate information transfer between registrants, researchers and registries/surveillance programs. Finally, increased efforts in documenting variables of individuals with CP into adulthood should be made in order to expand our understanding of CP across the lifespan.
authors: Department of Physical Therapy and Human Movement Sciences, Northwestern University, Chicago, IL, USA.
authors: Donna S
authors: DS
authors: Hurley
authors: Functional and Applied Biomechanics Section, Rehabilitation Medicine Department, Clinical Center, National Institutes of Health, Bethesda, MD, USA.
authors: Theresa
authors: T
authors: Sukal-Moulton
authors: The Rehabilitation Institute of Chicago, Chicago, IL, USA.
authors: Deborah
authors: D
authors: Gaebler-Spira
authors: Department of Physical Therapy and Human Movement Sciences, Northwestern University, Chicago, IL, USA.
authors: Kristin J
authors: KJ
authors: Krosschell
authors: Marianjoy Rehabilitation Hospital, Wheaton, IL, USA.
authors: Larissa
authors: L
authors: Pavone
authors: Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Hacettepe University, Ankara, Turkey.
authors: Akmer
authors: A
authors: Mutlu
authors: Department of Physical Therapy and Human Movement Sciences, Northwestern University, Chicago, IL, USA.
authors: Julius Pa
authors: JP
authors: Dewald
authors: University of Chicago Comer Children's Hospital and Kennedy Research Center on Intellectual and Neurodevelopmental Disabilities, Chicago, IL, USA.
authors: Michael E
authors: ME
authors: Msall
keywords: Cerebral palsy; Enablement; Functioning; Neuromotor disability; Surveillance