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Publication of ‘Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative’

Pink and white publication of ‘Research CP -- Setting a Patient-Centered Research Agenda for Cerebral Palsy’.Research CP is a PCORI funded initiative to establish a patient-centered research agenda for cerebral palsy. The Cerebral Palsy Research Network (CPRN) joined forces with CP NOW to organize the initiative. 273 members of the CP community including people with CP, caregivers, patient advocates, clinicians and researchers participated in the initiative by attending a set of webinars to establish a common language for clinical research opportunities in CP. Of those that attended the webinar series, 201 went on to create and vote on research questions that mattered most. The iterative voting process generated more than 26,000 votes to establish a prioritized research agenda for the CP community. In June 2017, 47 of those who participated came together for the Research CP workshop in Chicago to further hone the research agenda and build relationships between clinicians and community members. 16 top questions came from that 1.5 day effort. Those top five research questions were:

  1. Research the issues around aging with CP, to understand not only how to treat adults now, but also to update our treatments & therapies with children who have CP to prevent some of the secondary impairments such as pain, fatigue, and functional loss. (Care-Treatment1 1)
  2. What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize function in each GMFCS category across the lifespan? (Research2 1)
  3. Which interventions [surgeries, injections, medications and therapies (orthotics, equipment, training)] are associated with better functional outcomes (important to child/ family) controlling for GMFCS level, age and co-morbidities (Research 2)
  4. Increasing age is related to pain and fatigue in people with CP, regardless of GMFCS level. What variables are important to monitor/treat early on in life to prevent the development of pain and fatigue later on in life? (Research 4)
  5. What are the best methods and ways to reduce pain, falling, lack of stamina, and deterioration of function that can have a negative impact on the quality of life for people with CP especially in adulthood? (Research 5)

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