Publications and Presentations

Research CP: Setting a patient-centered research agenda for cerebral palsy
Developmental Medicine and Child Neurology, August 21, 2018
Gross, PH, Bailes, AF, Horn, SD, Hurvitz, EA, Kean, J, Shusterman, M

AIM To establish a patient-centered research agenda for cerebral palsy (CP).
METHOD We engaged a large cross-section of the extended community of people living withCP and those providing healthcare to people with CP (‘the community’) in an educational series and collaborative survey platform to establish an initial list of prioritized research ideas. After online workshops, a facilitated Delphi process was used to select the 20 highest priorities. Select participants attended an in-person workshop to provide comment and work toward consensus of research priorities.
RESULTS A research agenda for CP was developed by the community, which included consumers, clinicians, and researchers interested in advancing the established research agenda. The results included the top 16 research concepts produced by the process to shape and steward the research agenda, and an engaged cross-section of the community.
INTERPRETATION It has been shown that proactively engaging consumers with clinical researchers may provide more meaningful research for the community. This study suggests that future research should have more focus on interventions and outcomes across the lifespan with increased emphasis on the following outcome measures: function, quality of life, and participation.