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Priorities in Adult Cerebral Palsy Research

Professional headshots of four investigators smiling for a cerebral palsy adult study.The Cerebral Palsy Research Network, in partnership with Cerebral Palsy Alliance Research Foundation (CPARF), has awarded its first Accelerator Award, a new internal funding program supported by CPARF to advance critical research questions more quickly. This particular award will be used to prioritize research questions about adults with cerebral palsy (CP). The study, entitled “Priority Setting for Multi-center Research Among Adults with CP” will be conducted by leading investigators focused on adult research – Cristina Sarmiento, MD, (principal investigator), Ed Hurvitz, MD and Mary Gannotti, PT, PhD (consultants) in partnership with Jocelyn Cohen, a community member co-investigator. The study team will lead a series of focus groups around the country to gather input from the community about which health concerns are most pressing to them. This study will build upon the original patient-centered research agenda created through the Research CP program.

The main objectives of this award are to develop a community prioritized set of questions to research through a multi-center clinical trial. The priority setting process will use qualitative methods (a process to find common themes in transcribed answers from focus group participants). Participating community members will be drawn from the CP Research Network’s MyCP community engagement platform and from the CPARF community. They will be involved in every stage of the research process and will have the opportunity to be co-investigators for the study that follows.

Our December webinar will feature the investigative team for this grant. They will provide a more in-depth overview of the planned research and how community members may become involved. This will be a separate webinar from this evening’s webinar on pain classification though it will feature some of the same speakers. Subscribers to our MyCP webinar series will receive an email with the webinar instructions when it is announced in December.