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Review
, 31 (1), 185-194

Registry-based Research in Cerebral Palsy: The Cerebral Palsy Research Network

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Review

Registry-based Research in Cerebral Palsy: The Cerebral Palsy Research Network

Edward A Hurvitz et al. Phys Med Rehabil Clin N Am.

Abstract

Registries are a powerful tool for clinical research. Clinical registries for cerebral palsy can aid in comparative effectiveness research, especially using the practice-based evidence model. The Cerebral Palsy Research Network (CPRN) was initiated in 2014 as a patient-centered, multidisciplinary registry. The leadership group initiated a 4-stage participatory action research process: listen, reflect, plan/analyze, and take action. CPRN also joined with CP NOW, an advocacy group, to create a research agenda for cerebral palsy. With more than 20 centers and growing, CPRN hopes to generate evidence for developing best practices and measure their implementation and impact for individuals with cerebral palsy throughout North America.

Keywords: Cerebral palsy; Cerebral palsy research network; Comparative effectiveness research; Registry.

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