The Cerebral Palsy Research Network (CPRN), in partnership with CP NOW, will convene a 40-person workshop in Chicago, IL in June, 2017 as part of the the Research CP initiative to set a patient-centered research agenda for cerebral palsy (CP). Twenty-two members of the CP community will represent a broad swath of people living with CP including:
- Seven adults with CP
- Four caregivers of adults with CP
- and 11 parents of children with CP.
The attendees were selected from 43 applicants who sought to participate in the meeting after engaging with more than 150 community members involved in the Research CP educational series and surveys. Joining the CP community participants will be twenty-one members of the CP clinical research including:
- Three developmental pediatricians
- Two neurologists
- Two neurosurgeons
- Two orthopedic surgeons
- Three physical medicine and rehabilitation doctors
- Four therapists (Three PTs and one OT)
- Five Ph.D., researchers including expertise in biostatistics, neuroscience, measurement and assessment, physical therapy, rehabilitation science, speech and language, and kinesiology.
These professional attendees represent some of the most committed and accomplished clinician researchers who treat people with CP. Most of the professional attendees are also members of the American Academy of Cerebral Palsy and Developmental Medicine which is supporting the Research CP initiative.
The Research CP workshop, which will be streamed to the public, will seek to synthesize the more than 300 research ideas that were generated by CP professionals and community members in March, 2017. The synthesis will result in the ultimate goal of a prioritized patient-centered research agenda for CP which will be published broadly. The meeting will be professionally facilitated by an expert in medical research prioritization processes. The Research CP workshop is partially funded through a Eugene Washington PCORI award.