Setting a Patient-Centered Research Agenda for Cerebral Palsy

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CPRN and CP NOW Foundation

CPRN and CP NOW Foundation

Research CP is an educational series and agenda setting process in 2017 that will culminate in a one-and-a-half day workshop in Chicago that will bring together people from the CP community with clinician researchers to set a prioritized research agenda for cerebral palsy. This project has been partially funded by a Eugene Washington PCORI Engagement award from the Patient-Centered Outcomes Research Institute (PCORI) to help us develop a community of people committed to the principles of patient-centered research for CP. While there are several ways to engage in the Research CP educational series, attending the workshop represents the deepest level of commitment to the end result of a research agenda for CP. The project overall will consist of four phases:

  1. A webinar series intended to educate participants about collaborative research and quality improvement networks;
  2. A survey to collect top research questions and outcomes to improve;
  3. The Research CP workshop in Chicago in mid 2017;
  4. A whitepaper to convey the results of the Research CP series.

The Cerebral Palsy Research Network and its partner in this series, CP NOW, are seeking members of the cerebral palsy community and providers for the community that are committed to advancing the most promising research for CP. Participants will be asked to spend approximately five hours during March and April to view our webinar series in preparation for the workshop. In May, we will distribute a survey to capture both the patient and provider communities’ views on what outcomes are most important and what are the most pressing research questions to be resolved. The results of this survey will be essential input to the workshop where participants will synthesize this input into a prioritized research agenda for CP.

Members of the community who complete the webinar series and attend the workshop will be compensated for their time commitment and have their travel expenses reimbursed. The Research CP workshop attendance is anticipated to be between 25-40 participants split equally between providers and members of the CP community.