CPARF-funded study suggests that 8% of all people with cerebral palsy could benefit from genetic testing, opening future pathways for improved care and quality of life.
(NEW YORK)- New research published in the Journal of the American Medical Association (JAMA) Pediatrics found that 8% of all patients with cerebral palsy could benefit from genetic testing that could lead to improved quality of life and reduce the overall cost of care. The finding could help widen the pool of people living with cerebral palsy who could benefit from future therapeutic treatments currently under development.
The study, entitled Clinical actionability of genetic findings in cerebral palsy, was conducted by Dr. Sara Lewis Dr. Michael Kruer at Phoenix Children’s Hospital and made possible through a research grant from Cerebral Palsy Alliance Research Foundation (CPARF). Drs. Lewis and Kruer led a group of genetic counselors, clinicians, and researchers from across the world to develop a framework for assessing how many people with cerebral palsy (CP) may have a gene mutation with a known and effective treatment.
“We are grateful for CPARF’s support in making this research possible,” said Dr. Sara Lewis. “Cerebral palsy is diverse, and we hope these findings will provide both clinicians and individuals with the knowledge and the tools to drive the design of improved therapeutic treatments, spur more informed clinical decision-making, and empower individuals to advocate for themselves or their family members with CP.”
Genomics is one of six research priorities CPARF funds, along with adulthood, chronic pain, early detection and intervention, regenerative medicine, and technology.
“This discovery has the potential to vastly improve the quality of life for people living with cerebral palsy,” said Chris Olver, Executive Director of CPARF. “According to the Centers for Disease Control, the lifetime cost of care for a person living with cerebral palsy is estimated to be around $1.6 million, and we know that’s an underestimate for a lot of people. Dr. Lewis and Dr. Kruer’s research could help change overall cost of care, and we are so proud to be able to support this work.”
While the idea of genetic mutations causing CP is relatively new, many studies have found that genetic variations may account for a quarter of all cases of CP globally. Several of these genes have been identified as causing other conditions, such as intellectual disabilities, epilepsy, and autism spectrum disorder. Treatments have already been designed and tested successfully in patients with other developmental disabilities caused by the same genes, and these treatments could provide new opportunities for more effective treatments and transform quality of care and life for people living with CP.
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About Cerebral Alliance Research Foundation (CPARF):
Cerebral Palsy Alliance Research Foundation (CPARF) 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. Learn more at cparf.org.
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Media Contact: Kaitlyn Meuser, Marketing and Communications Manager, Cerebral Palsy Alliance Research Foundation, kaitlyn.meuser@cparf.org; 646-503-1437
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