By: Alice Melao
The 2017 Strategic Plan for Cerebral Palsy Research is finished and was recently announced by the National Institute of Neurological Disorders and Stroke (NINDS) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
The plan identifies several research priorities that have shown promise in advancing scientific understanding of cerebral palsy and toward finding new therapeutic and preventive strategies, according to NINDS Director Walter Koroshetz and NICHD Director Diana Bianchi.
Cerebral palsy is a leading cause of lifelong disability and is estimated to affect 1 in 323 children in the U.S.
“NINDS and NICHD are committed to supporting scientific research that leads to more effective ways to prevent cerebral palsy and improve quality of life for those affected. We hope the strategic plan will help guide cerebral palsy research over the next 5-10 years,” the agency directors wrote.
The research guidelines were established based on information from scientists, clinicians, and advocates for individuals affected by cerebral palsy during two scientific workshops at the National Institutes of Health (NIH) in Rockville, Maryland. Additional revisions were included in the final plan after a review of public comments shared in March and April 2017.
“We are grateful for the thoughtful comments submitted on the draft plan. In total, we received 33 comments from researchers, cerebral palsy organizations, clinicians, and individuals and family members affected by cerebral palsy,” Koroshetz and Bianchi wrote.
The plan highlights the need for better knowledge of potential disease biomarkers and fundamental mechanisms involved in the development of cerebral palsy. Other priorities include the development and consolidation of patient registries and databases. Common data resources are needed to allow researchers to share and compare data.
“We look forward to acting on the recommendations in the 2017 NINDS/NICHD Strategic Plan for Cerebral Palsy Research, in collaboration with other NIH Institutes, extramural researchers, and patient and professional organizations,” the directors said.
While the plan was being drafted, the NIH and other organizations were already working on some of the recommendations. In collaboration with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), NINDS began developing and revising its Common Data Elements for cerebral palsy research. Also, the Cerebral Palsy Research Network (CPRN) is currently developing a national registry for cerebral palsy patients and will carry out other studies.
Based on the 2017 recommendations, NINDS said it will use existing NIH resources and programs such as the Human Placenta Project and the BRAIN Initiative to promote further research.
Additionally, the NIH Research Plan on Rehabilitation, developed in 2016, will be used as a guide for research in the field of rehabilitative therapies.
Other entities including the Patient-Centered Outcomes Research Institute (PCORI) and the CP Now Foundation are joining CPRN to set priorities for patient-oriented research.
“We hope to continue to engage with our partners as we work together to make meaningful progress in cerebral palsy research,” the directors concluded.