Cerebral Palsy Alliance Research Foundation Funding Registry Study for Arabic-Speaking Countries

Sat 07 Oct 2023

In honor of World Cerebral Palsy Day, Cerebral Palsy Alliance Research Foundation (CPARF) proudly announces its first-ever funding of a fully international grant through its partnership with the American Academy of Cerebral Palsy and Developmental Medicine. The $25,000 award will fund a feasibility study to develop a multicenter cerebral palsy registry in Arabic-speaking countries.

“There are 18 million people with cerebral palsy worldwide and 17 million of them reside outside of the United States,” shared CPARF Executive Director Michael Pearlmutter. “We owe it to people with cerebral palsy everywhere to raise the standard of care where it matters most and increase access as quickly as possible.”

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.”

Cerebral Palsy Alliance Research Foundation 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. 

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