“It has been transformative for our field,” said Shenandoah “Dody” Robinson, M.D., a pediatric neurosurgeon at Boston Children’s Hospital, referring to the Hydrocephalus Clinical Research Network (HCRN), during a Cerebral Palsy Research Network (CPRN) information session at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting on Friday, October 24, 2015. The goal of CPRN is to be a collaborative research effort to improve treatments and outcomes of those with cerebral palsy.
Paul H. Gross, the co-founder of HCRN, is building CPRN with the same principles as HCRN to transform cerebral palsy research. Because of his work raising awareness for cerebral palsy at NIH and founding CPRN, the Academy presented him with the “Making a Difference” award at its annual meeting in Austin, Texas on October 23, 2015. In his general session speech, “From Anxiety to Impact: Focusing Parental Energy on Advancing Research,” Gross introduced the idea and progress of CPRN to an audience of 1,100 physicians and medical practitioners who treat patients with cerebral palsy (CP) and conduct research. The attendees were buzzing about the concept of a multi-center collaborative research effort to improve CP treatments and outcomes.
To build a research network requires team work and CPRN has assembled an experienced and committed group with its CPRN leaders. At the session, team members Amy Bailes, PhD PT MS, PCS, Mary Ganotti, PhD PT and Unni Narayanan, MBBS, M.Sc. FRCS(C) joined Gross for a Q&A session in a packed room with over 50 people on Friday evening.
The group discussed anticipated milestones, how to participate in CPRN, charter membership and how its Common Data Model (CDM) relates to the AACPDM effort to create Common Data Elements (CDE). Attendees from Nationwide Children’s Hospital emphasized the productivity gains from their use of Epic for the collection registry data. Information session attendees expressed a high degree of interest in participating in the CPRN registry. To receive CPRN updates, please follow by submitting your email address for alerts or contact firstname.lastname@example.org for more information.