As partners, CPARF and the Cerebral Palsy Research Network already operate robust registries in the US, and funding this study is a global extension of that work.
Driven by Dr. Sahar M. A. Hassanein from Shams University in Cairo, Egypt, an eight-person team with investigators throughout Egypt, Tunisia, Jordan, and Saudi Arabia will evaluate the practicality and affordability of a multicentric cerebral palsy registry in different settings and develop nationally driven evidence-based guidelines to follow children with cerebral palsy in Arabic-speaking countries.
Through statistical analysis estimating cerebral palsy’s prevalence, delineating its clinical spectrum, and describing perinatal risk factors of registered children and adolescents, this study will help develop a multicenter registry in Arabic-speaking countries. Featuring four major academic institutions in Egypt and Tunisia collectively, this study has the potential to revolutionize public health policies and clinical practice by narrowing the knowledge gap around cerebral palsy characteristics.
A registry of this caliber will serve as a foundation for ethically entering, storing, and sharing information reliably among participating institutions and Arabic-speaking countries. “This registry is a critical tool to reach such an underserved population,” Mr. Pearlmutter shared, “so that clinicians can gain awareness and patients can receive the best available treatments, no matter where they are.”
CPARF’S MISSION
Cerebral Palsy Alliance Research Foundation is a nonprofit organization that funds US-based research to change what’s possible for people with cerebral palsy, implements proven science, empowers people through education, and advances technology benefiting all disabled people worldwide. To learn more, visit http://www.cparf.org or contact [email protected].
Media Contact
Jocelyn Cohen, Cerebral Palsy Alliance Research Foundation, 646.340.1208, [email protected], https://www.cparf.org
SOURCE Cerebral Palsy Alliance Research Foundation
