CPRN was cited as an example of progress in CP research in the NIH Strategic Plan for Cerebral Palsy released earlier in 2017. The objective of the briefing was to determine ways that NIH and CPRN might collaborate to accelerate the NIH CP strategy. CPRN has invested in research network infrastructure similar to several NIH funded initiatives such as NeuroNext, StrokeNet and DS-Connect. NIH officers were interested to learn how CPRN’s burgeoning, rich data set of patient characteristics, interventions and outcomes could be mined to create new evidence based findings for CP treatment.
CPRN’s meeting with NIH officials comes just one month after the Senate Appropriations committee for Labor, Health and Human Services issued report language calling for increased collaboration between NIH and the research community and for the creating of funding opportunities for cerebral palsy. The report language was spearheaded by Reaching for the Stars: A Foundation of Hope for Children with Cerebral Palsy. CPRN appreciates the advocacy efforts of Reaching for the Stars and its impact on the dialogue with officers in multiple institutes in NIH.