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The cerebral palsy research registry: development and progress toward national collaboration in the United States
Donna S Hurley1, Theresa Sukal-Moulton, Michael E Msall
1Department of Physical Therapy and Human Movement Sciences, Feinberg School of Medicine at Northwestern University, Chicago, IL, USA. d-hurley@northwestern.edu
Insights
A new Cerebral Palsy Research Registry connects individuals with cerebral palsy (CP) and their families to researchers. This initiative aims to bridge the gap in data collection and promote vital research for this common childhood neurodevelopmental disability.
Area of Science:
- Neuroscience
- Pediatrics
- Public Health
Background:
- Cerebral palsy (CP) is the leading neurodevelopmental motor disability in children.
- CP necessitates lifelong medical, educational, social, and rehabilitative support.
- Existing population-based registries are lacking in the United States due to challenges like large population size and fragmented systems.
Purpose of the Study:
- To describe the development and current status of the Cerebral Palsy Research Registry.
- To address the gap between population-based and clinical-based CP registries.
- To foster research by connecting individuals with CP to a network of researchers.
Main Methods:
- Development of an expandable, population-focused research registry for cerebral palsy.
- Establishment of a network connecting individuals with CP, their families, and regional researchers.
- Longitudinal data collection on etiologic, demographic, and functional severity aspects of CP.
Main Results:
- The Cerebral Palsy Research Registry has been created to fill a critical gap in research infrastructure.
- The registry facilitates connections between affected individuals and the research community.
- The registry is designed to be expandable for future growth and data integration.
Conclusions:
- The Cerebral Palsy Research Registry offers a novel approach to studying CP in the United States.
- This registry has the potential to significantly impact families and individuals with CP.
- The initiative aims to advance research and understanding of cerebral palsy domestically and internationally.
Abstract:
Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad.
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