Registry-based Research in Cerebral Palsy : The Cerebral Palsy Research Network - 22/11/19

Doi : 10.1016/j.pmr.2019.09.005

Edward A. Hurvitz, MD ^a,^⁎ , Paul H. Gross ^b, Mary E. Gannotti, PT, PhD ^c, Amy F. Bailes, PT, PhD ^d, Susan D. Horn, PhD ^e
^a Department of Physical Medicine and Rehabilitation, Michigan Medicine/University of Michigan, 325 East Eisenhower Parkway, Ann Arbor, MI 48108, USA
^b Department of Population Health Sciences, University of Utah, 295 Chipeta Way, Williams Building, Salt Lake City, UT 84108, USA
^c Department of Rehabilitation Sciences, University of Hartford, Dana 401F, 200 Bloomfield Avenue, West Hartford, CT 06117, USA
^d Division of Occupational Therapy and Physical Therapy, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, MLC 4007, Cincinnati, OH 45229, USA
^e Health System Innovation and Research Division, Department of Population Health Sciences, University of Utah School of Medicine, Williams Building, Room 1N474, 295 Chipeta Way, Salt Lake City, UT 84108, USA

^∗Corresponding author.

Résumé

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.

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Keywords : Cerebral palsy, Registry, Cerebral palsy research network, Comparative effectiveness research