Gross, a former advisor to NINDS, played a significant role in the initial workshop that forms the clinical basis for the NIH strategy for CP. That workshop, held in November 2014, brought together many of the people that would form the founding leadership team for CPRN. Amy Bailes, PhD, Mary Gannotti, PhD, and Garey Noritz, MD were all in attendance and formed the initial relationships that kicked off CPRN. This group participated in a post-meeting task force to set a strategy for a national CP registry. The CPRN Registry was borne out of the discussions of this group and fills a critical gap in the NIH strategy for CP.
The NIH strategy will detail the conclusions from that initial workshop and a basic and translational workshop that was held in March 2016. NINDS program directors Jim Koenig, PhD and Codrin Lungu, MD, will present the strategic plan for CP. Directors from Reaching for the Stars, A Foundation for Hope for Children with Cerebral Palsy will also be in attendance at the presentation. Reaching for the Stars has been instrumental in influencing the Senate Appropriations Report Language that asked NIH to develop a strategic plan for CP.