The Cerebral Palsy Research Network (CPRN) extended the registration deadline for Research CP Dystonia Edition until Friday, December 13, 2019. This extension means that people with an interest in dystonia in cerebral palsy (CP) – either members of the community or clinicians that treat people with dystonia in CP – can still join the research initiative to set a patient-centered research agenda for the condition! The program requires participants to watch three informational webinars about dystonia: definitions of dystonia, a dystonia care pathway and current research. The webinars total two hours of content delivered by leaders in the care, treatment and research of dystonia in CP. For existing participants, this extension gives more time to complete the program by viewing the remaining webinars over the next two and half weeks.
|Overview and Definition||Survey 1|
|A Care Pathway for Dystonia in CP||Survey 2|
|Current Research and Gaps||Survey 3|
After viewing all three webinars, participants will be invited to submit their uncertainties or questions about treatment and research for dystonia in CP. “Uncertainties” can be any question that participants have that they believe requires further research. These questions may be related to diagnosis, treatment recommendations, causes or long-term outcomes. Next, in order to set the patient-centered research agenda, there will be a voting process on the proposed uncertainties and their importance. Although participants are not required to submit uncertainties in order to participate in the voting process, uncertainties must be submitted by December 13, 2019. The voting process to set the research agenda for dystonia in CP will take place in early 2020.