Research CP Dystonia Edition

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 does it work?

Research CP Dystonia Edition begins with a series of webinars to educate community members and clinicians about dystonia in CP.  Webinars are one hour in length with approximately 40 minutes of presentation and 20 minutes of questions and answers. The topics for the webinar series are below. You may use the links to view the webinars:

Webinar Survey
Overview and Definition Survey 1
A Care Pathway for Dystonia in CP Survey 2
Current Research and Gaps Survey 3

Each webinar is followed by a brief survey sent to you in email that re-enforces the learning from the webinar. The webinar series is 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.  Idea generation begins on November 7. You must sign-up for Research CP with the link above, view all three webinars and complete the surveys to participate in the generation of the research agenda.