Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), has concluded its educational webinar series of five with this week’s final webinar on patient registries. The Cerebral Palsy Research Network (CPRN) and CP NOW are grateful to pediatric neurosurgeon Jay Riva-Cambrin, M.D. and Megan O’Boyle for their informative presentations on the value of patient registries. CPRN chairman Paul Gross also described existing and planned CP registries in the United States. The webinar covered a range of types and benefits of patient registries from two other medical conditions with well established registries. The webinar recording is still available for viewing.
With the completion of the webinar series, the Research CP project now moves into its next phase of preparing for the Research CP workshop that will be held in mid June 2017 in Chicago. This phase includes not only the selection of the attendees but also further processing of the initial set of research ideas that were generated by the collaborative survey that ran in parallel with the webinar series.
Nearly 400 research ideas were generated and voted upon by 182 people from the CP community of patients, parents/caregivers and advocates and from medical professionals who treat CP including doctors and therapists. For example, one of the leading research ideas culled from the surveys is “Research the issues aging with CP, to understand not only how to treat adults now, but to also update our treatments and therapies with children who have CP to prevent some of the secondary issues of pain, fatigue and functional loss.”
The Research CP workshop, which will include a balanced mix of attendees including patients, parents/caregivers, CP advocates and medical professionals, will synthesize the research ideas into a prioritized research agenda that will be published, shared broadly with researchers and will guide CPRN in its selection of future study concepts. The input from the CP community is invaluable to setting a patient-centered agenda that will hopefully improve outcomes long term.