Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2020 Feb;31(1):185-194.
doi: 10.1016/j.pmr.2019.09.005. Epub 2019 Nov 7.

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

Edward A Hurvitz  1 , Paul H Gross  2 , Mary E Gannotti  3 , Amy F Bailes  4 , Susan D Horn  5
Affiliations
Review

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

Edward A Hurvitz et al. Phys Med Rehabil Clin N Am. 2020 Feb.

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.

PubMed Disclaimer