Cerebral Palsy (CP) refers to a group of disorders affecting movement and posture, attributable to non-progressive injuries/disturbances to the developing brain. CP has physical, emotional, social, and financial ramifications for individuals and their families. To successfully incorporate the patient’s perspective into clinical research is complex; given the multidimensionality and variability of the condition, patient engagement needs to start early in the research process. Due to fragmentation in the patient advocacy landscape and the multidisciplinary treatment of CP, no effort has been made to date to establish a comprehensive patient-centered comparative effectiveness research (CER) agenda.
CP NOW and the Cerebral Palsy Research Network (CPRN) are seeking to bring patients, caregivers, and clinicians together to shape a comprehensive research agenda for CP that will be patient-centered and prioritized by the greater CP community. The project team will provide an educational series of webinars (open to the public) about clinical research, followed by a survey of research priorities from the patient and provider communities. This information will be used to assemble a set of committed patients and clinician researchers to participate in a workshop in Chicago, Illinois to establish a patient-centered CER agenda.
Research CP will bring together an engaged community of providers and patients with CP to establish a prioritized agenda for patient-centered research for the cerebral palsy community. The published results of this workshop will then be used to guide patient-centered research conducted by the broader clinical research community and CPRN in conjunction with its Community Advisory Committee.
The project will begin with a call for participants from both the patient and provider/stakeholder community to watch the Research CP webinar series as a preliminary step before the in-person meeting. A brief application will follow for those interested in convening in Chicago. Selected patients/caregivers will be eligible for compensation to attend the workshop, participate in the webinar series, and complete the community survey. The survey will ask participants to specify their top three research questions. In addition, the public will also be invited to participate in the webinars and the survey (without compensation). The workshop will use a professional facilitator to coordinate and prioritize the meeting process in order to establish a patient-centered set of research questions.
This project will result in several significant contributions to the CP community and advancing community research. These include: a free webinar series that can be used to educate patients and stakeholders in patient-centered clinical comparative effectiveness research; patient registries; collaborative networks of hospitals and clinics serving the CP community; survey results describing current patient and provider priorities in CP research; widely disseminated patient-centered CER agenda; and active engagement of patient and stakeholder committees to address the proposed research agenda.
Patient and provider stakeholder participants will represent the diversity of people with CP and the family members and professionals involved in their care. The team will accomplish this by mobilizing partnerships with other community organizations and clinical care sites and their leaders to broadly publicize the webinars and surveys. Patients and providers that attend the workshop will be more intimately engaged and able to share their personal perspectives and ideas to further discuss and build upon the survey data and the perspectives gathered there. Community participants will be invited to join in future CPRN research projects based on the established CER agenda.
Project collaborators include AACPDM, the American Physical Therapy Association, CP Alliance Research Foundation, CP Foundation, CPRN, Cure CP, Reaching for the Stars, and United Cerebral Palsy.
Project Resource: Research CP Webinar Series