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

• Published in: Physical medicine and rehabilitation clinics of North America Vol. 31; no. 1; pp. 185 - 194
• Main Authors: Hurvitz, Edward A, Gross, Paul H, Gannotti, Mary E, Bailes, Amy F, Horn, Susan D
• Format: Journal Article
• Language: English
• Published: United States 01-02-2020
• Subjects: Comparative effectiveness research; Cerebral palsy; Cerebral palsy research network; Registry
• ISSN: 1558-1381
• DOI: 10.1016/j.pmr.2019.09.005

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.