Cerebral Palsy Research Network Blog

NIH Forum features CPRN’s Registry

The Cerebral Palsy Research Network (CPRN) chairman and founder, Paul Gross, moderated a panel of experts entitled “Big Data: How to Address Custom Needs” this past week at the National Institutes of Health (NIH).  The National Institute of Neurological Disorders and Stroke (NINDS), the largest funder of science of the brain and nervous system, held its annual Nonprofit Forum entitled “Progress through Partnership.”  The forum gathers leaders from patient advocacy organizations together with the directors of NINDS to increase understanding of the institute and enhance collaboration between NINDS staff and these nonprofits.

“Paul Gross has been an integral part of the success of the NINDS Nonprofit Forum for the past several years” said Nina Schor, MD, PhD, acting Director of NINDS.  “This year he took on the leadership role on a panel on Big Data featuring several distinguished speakers. He also led two successful breakout sessions for the more than 50 patient groups who were attending.”

The panel presented examples of the use of big data in a number of conditions including Alzheimer’s, cerebral palsy, Friedrich’s ataxia, hydrocephalus, Parkinson’s disease and ultra-rare diseases.  Panelists then gathered with attendees a breakout session to further brainstorm big data applications for attendees’ custom needs.  CPRN’s use of data gathered from electronic medical records systems and planned integration with genomic analyses provided attendees with a unique solution for making new discoveries. The breakout session delved into a vigorous discussion of patient registries of which many different approaches were represented in the room.  Ultimately, the NINDS Nonprofit Forum delivered on its promise of its title of progress through partnership.

Working with NIH is important for CPRN because it strengthens CPRN’s position for future grants because of our demonstrated innovation with our registry.