Critical Step In Creating Patient-Centered Research

The Cerebral Palsy Research Network (CPRN) invited a group of 11 adults with CP and adult caregivers to form the adult study panel of its Patient Advisory Committee (PAC). The PAC will be involved in the work of CPRN at several levels including advising on the strategic direction of CPRN, help prioritize its research and participate at every level of study development including design, recruitment, analysis, and dissemination. Patient involvement not only empowers the community, but also increases the relevance of study results.^* The adult study panel will be focused on the specific areas of adult study in CPRN’s research starting with the CPRN Registry. The first effort for the adult study panel will be to review the CPRN Registry and its initial patient reported outcomes. The adult study panel members include:

• Kate Cardoza
• Dallila Castillo
• Jill Chambers
• Ted Conway
• Karen Irick
• June Kailes Issacson
• Andrew McAleveay
• Karen Pleasant
• Carol Shrader
• Robert Watson
• Duncan Wyeth

CPRN’s Adult Registry team, led by Mary Gannotti, PT Ph.D. of University of Hartford, and Debbie Thorpe, PT Ph.D. of University of North Carolina Chapel Hill, will engage the members of adult study panel in the CPRN’s initial path into research of adults with CP.

Michele Shusterman, CPRN’s community liaison, will be expanding the PAC to include an additional 10-12 patients and caregivers for children in the coming weeks.

^* Frank L, Basch E, Selby JV, For the Patient-Centered Outcomes Research Institute. The PCORI Perspective on Patient-Centered Outcomes Research. JAMA.2014;312(15):1513-1514. doi:10.1001/jama.2014.11100.