Research CP Dystonia Edition is a collaborative initiative between CPRN and CP NOW to set a patient centered research agenda for important questions in dystonia in cerebral palsy (CP). It consists of a series of educational webinars, online collaborative idea generation and prioritization from members of the CP community and clinician researchers.
What is Research CP?
Research CP is an initiative developed by CPRN to set a patient-centered research agenda for CP overall. Initially funded through an award from the Patient Centered Outcomes Research Institute, Research CP resulted in 16 “top ideas” for research in CP that drives the CPRN research priorities. CPRN and CP NOW created Research CP Dystonia Edition to do a deep dive on important questions in dystonia in CP which is often under diagnosed and difficult to treat.
How will it work?
Research CP Dystonia Edition will begin with a series of webinars to educate community members and clinicians about dystonia in CP. Webinars will be one hour in length, starting at 6 pm Eastern Time with approximately 40 minutes of presentation and 20 minutes of questions and answers. The dates and topics for the webinar series are:
- October 16: Research CP Dystonia Edition Overview by Paul Gross and Bhooma Aravamuthan, MD, DPhil
- October 30: Care Pathways by Darcy Fehlings, MD
- November 6: Current Research and Gaps by Michael Kruer, MD
The webinar series will be followed by a series of idea generation and voting based on the collaborative survey platform CoDigital. Between each idea generation session, the leadership team will evaluate the output and consider additional informational sessions or instructions for participants. The online voting process will be repeated up to three times to finalize the Research CP Dystonia Edition research agenda. Upon completion, the leadership team will seek to publish the research agenda and CPRN will include the agenda in its opportunity map for future research.
Who should participate?
- Members of the community with dystonia in CP including adults with dystonia or parent/caregivers of child with dystonia
- Clinicians and therapists who treat people with dystonia in CP
- Basic, translational and clinical researchers interested in dystonia research
How do I sign up?
CPRN will use its consumer portal, MyCP, to engage the community and clinicians in discussions. To sign up for Research CP Dystonia Edition, go to MyCP to join the initiative. Webinar registration details will be sent in email upon completion of sign-up.