By: Walter Koroshetz, NINDS Director, and Diana Bianchi, NICHD Director
Cerebral palsy is the most common motor disability in childhood, affecting around 3 children per 1000 in the U.S. While research has led to interventions that can prevent or attenuate cerebral palsy in some at-risk infants, better preventive measures are needed, and few, if any, brain-targeted treatments exist that result in strong and consistent functional improvement for children and adults living with cerebral palsy.
The research recommendations presented in this plan were developed based on discussions at two scientific workshops held by NINDS, NICHD, and cerebral palsy nongovernmental organizations, and they are intended to guide cerebral palsy research over the next 5-10 years. We welcome feedback on any aspect of the plan, including whether it addresses challenges and opportunities likely to yield meaningful advances in cerebral palsy research and clinical care, and how the research community should prioritize the recommendations in the plan. We encourage you to view the plan and share your comments through April 7, 2017.
Even as we finalize the NINDS/NICHD Strategic Plan for Cerebral Palsy Research, NIH and other organizations are already acting on some of the opportunities it highlights. For example, NINDS worked with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to develop Common Data Elements for cerebral palsy research, which will help to improve data quality and facilitate data sharing and integration across studies. Beyond NIH, the Cerebral Palsy Research Network (CPRN), established in 2015, is developing a national registry for cerebral palsy patients and will conduct research studies and quality initiatives to reduce variation in clinical practice and improve outcomes.
I look forward to seeing the progress we can make through research to understand the pathways that lead to cerebral palsy and to develop new and improved strategies for prevention and treatment.