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.MethodA 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.ResultsLiterature 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.InterpretationCP 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.

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report

“…Existing CP specific registries focused on risk factors and prevalence or provided a vehicle for recruitment for research projects. 15 , 16 Some registries included information about schools and families, 17 had specific medical information (genetic mapping), 18 or had patient-reported outcomes. 10 There was a need for a registry that collected both clinical and patient-reported information.…”

MRI and Motor Outcomes in Children with Cerebral Palsy

“…Until a unified approach to reporting MRI findings with validated outcomes in function are used, the opportunity exists to advance the link, especially with the use of the population-based registries in Australia, Scandinavia and Europe [5, 6, 7]. Population registry methodology is the most efficient means to this end.…”

A South African cerebral palsy registry is needed

“…[16] CP registers are ideal for monitoring effectiveness of interventions and policy changes over time. [17] The establishment of a multi-institution CP registry would further facilitate the relationships between sectors that are involved in the holistic management of children with CP, i.e. the healthcare sector, and educational, rehabilitation and community settings.…”

“…the healthcare sector, and educational, rehabilitation and community settings. [17] The information-rich CP database that can be created through the registry would also provide a source from which novel research can be done to inform strategies for the prevention of and management strategies for CP in SA. [17] This calls for the combined efforts of government and other stakeholders to leverage and expand the clinical expertise in the SA healthcare system, invest in high-quality data management and curation infrastructure.…”