By: Walter Koroshetz, NINDS Director, and Diana Bianchi, NICHD Director
Cerebral palsy is a group of neurological disorders affecting mobility, balance, and posture and thought to result from injury to the developing brain before or soon after birth. It is a leading cause of lifelong disability with a prevalence of 1 in 323 children in the US. Today, NINDS and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) released the final 2017 Strategic Plan for Cerebral Palsy Research. The plan outlines a set of research priorities that promise to advance our understanding of cerebral palsy and inform new approaches for its treatment and prevention.
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, both at NIH and in the broader cerebral palsy research community. Consistent with this goal, we sought input from scientists, clinicians, and advocates for individuals affected by cerebral palsy when developing and finalizing the plan. The plan’s recommendations were drawn from discussions at two scientific workshops that brought these groups together, and the final plan includes revisions in response to comments received on the draft plan posted online in March 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. Many comments supported research priorities emphasized in the plan, including: understanding basic mechanisms to inform therapies, expanding focus on neuroplasticity, enabling progress on non-invasive neurostimulation techniques, addressing impacts across the lifespan, developing common data elements to enable researchers to share and compare data, consolidating patient registries and databases, promoting new research technologies, and fostering the next generation of cerebral palsy researchers and multidisciplinary research. Other comments were helpful in pointing out areas deserving more emphasis, such as genetics, non-motor aspects of cerebral palsy and secondary conditions, including pain, cognitive impairment, epilepsy, and mental health.
In addition to comments related to the NIH research mission, we also received important input regarding long term care and guardianship, evaluating models of care and care coordination, and improving access to education, employment opportunities, and high-quality healthcare. This input will be included in discussions with relevant Federal agencies and private organizations.
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. As noted in our announcement of the draft plan, progress is already underway. NINDS worked with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to develop and revise Common Data Elements for cerebral palsy research, and beyond NIH, the Cerebral Palsy Research Network (CPRN) is developing a national registry for cerebral palsy patients and will conduct research studies and quality initiatives. Among our next steps to advance priority areas in the plan, we will look for opportunities to leverage existing NIH resources and programs relevant to cerebral palsy research, such as the Human Placenta Project or the BRAIN Initiative. We also hope to attract investigators from a wide range of disciplines to cerebral palsy research, to bring broader expertise and perspectives to our goals.
Importantly, we recognize that this plan alone will not address all challenges in cerebral palsy research, or all challenges facing individuals with cerebral palsy. The NIH Research Plan on Rehabilitation developed in 2016, will serve as a further guide for research related to rehabilitative therapies. Furthermore, we are encouraged by efforts led by some of our partners in complementary directions. For example, with support from the Patient Centered Outcomes Research Institute (PCORI), CPRN and the CP Now Foundation are working with the CP community 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.
Related links:
Report from 2016 NINDS/NICHD workshop, “Basic and Translational Research in Cerebral Palsy”