Research CP Published!

Setting a Patient-Centered Research Agenda for Cerebral Palsy

Setting a Patient-Centered Research Agenda for Cerebral Palsy

The Cerebral Palsy Research Network (CPRN) is excited to have its first published research manuscript. Setting a Patient-Centered Research Agenda for Cerebral Palsy is available in Developmental Medicine and Child Neurology. And even better it is open to the public free-of-charge so that it is available to all in the CP community! Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), is a collaboration between CPRN and CP NOW, a nonprofit focused on education and research for people and families living with CP. Research CP started in March 2017 with a series of educational webinars, online polls to establish a research agenda and culminated in a face-to-face workshop in Chicago, Illinois in June 2017.

With broad participation from the extended community of people with CP, caregivers of children and adults with CP, the medical provider community, and community advocates, Research CP sought to establish a deep dialogue about what questions were most pressing that could be addressed through high-quality biomedical research. The initiative produced a list of 16 top research ideas and a wealth of other important criteria for CPRN and other clinical researchers to prioritize for future research studies. The 16 research ideas fell into four high level categories of research interest:

  • Comparative Effectiveness of Interventions
  • Exercise, Physical Activity and Chronic Disease Risk
  • Understanding Aging
  • Other topics including Pain, Neuroplasticity and Quality of Life.

In addition to the publication of these research areas for CP researchers to consider, several other important steps have been taken by CPRN to ensure the priorities of Research CP are realized to benefit people with CP. CPRN has integrated the Research CP agenda into its core criteria for evaluating research projects and created a community advisory committee to continue the dialogue about these research ideas. It plans to facilitate an ongoing dialogue with the community about these research projects.

CPRN and CP NOW appreciate the support of several organizations in making this initiative possible including an award from the Patient-Centered Research Outcomes Institute, additional funding support from the Cerebral Palsy Alliance Research Foundation and the support for dissemination of these results from the American Academy for Cerebral Palsy and Developmental Medicine.