Report of a workshop on research gaps in the treatment of cerebral palsy published on August 24, 2016
In November 2014, the National Institutes of Health (NIH) organized a workshop called the “The state-of-science and treatment in cerebral palsy.” The organizers of the NIH workshop included National Institutes of Neurological Disorders and Stroke (NINDS) program directors Dr. Deborah Hirtz and Dr. Codrin Lungu, Dr. Diane Damiano of the NIH Clinical Center, and NINDS Advisory Council members Paul Gross and Dr. Jonathan Mink, recently authored an article published in Neurology called Report of a workshop on research gaps in the treatment of cerebral palsy. The article details the findings from the workshop including a description of the gaps in CP and the key initiatives recommended as an outcome of the workshop. Neurology is the official journal of the American Academy of Neurology and this publication will increase awareness of the efforts to form a national registry for CP.
A number of the co-founders of the Cerebral Palsy Research Network (CPRN) first met at that workshop. It assigned task force leaders to advance these key initiatives identified in the meeting. Gross was asked to co-lead the initiative to define a national CP registry. Other initiatives included conducting more comparative effectiveness research (CER) on CP treatments, more basic and translational science research and more focus on research of adults with CP. CPRN was born out of the national CP registry initiative and has since incorporated efforts to conduct more CER research (see our PCORI application overview) and the study of adults with CP (see our post on the adult registry). Numerous members of the CPRN leadership team – Paul Gross, Dr. Amy Bailes, Dr. Mary Gannotti and Dr. Garey Noritz – attended the meeting and agreed to advance these initiatives together in the months that followed. We are excited to see our genesis documented in Neurology.