Dystonia in cerebral palsy (CP) is not well understood. The Cerebral Palsy Research Network (CPRN) and its strategic partner CP NOW are sponsors of a program called Research CP, which is a collaborative group of CP community stakeholders trying to make a difference in CP research. The latest series of webinars is called Research CP Dystonia Edition and the first webinar was last week. It is now posted for public viewing. The webinar presentation is 45 minutes and covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP). More than fifty participants watched the webinar. Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the blank number of attendees who included parents of children, people with CP, clinicians and therapists.
The introductory webinar for Research CP Dystonia Edition is the first of three in a series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge. People that attend or watch the webinar series will be invited to collaborate in an agenda setting process to determine the most important questions to be researched about dystonia in CP. At the conclusion of the research agenda development, CPRN/CP NOW will seek to publish a paper describing the process and the results from Research CP Dystonia Edition. In addition to broadly sharing the results of the process, CPRN will use the finalized agenda to drive its future research efforts related to dystonia in CP.
There is still time to get involved in the process! Clinicians and community members can sign up at MyCP to participate in future webinars. The first webinar is available for viewing here. The next webinar, entitled “A ‘Care Pathway’ for Dystonia” will be presented by Dr. Darcy Fehlings on October 30, 2019. If you haven’t registered for the second webinar, you can do so here. Please note that in order to participate in setting the research agenda, you must watch all three webinars prior to November 11, 2019 when the agenda setting will begin. You don’t have to watch them live as they are recorded and can be replayed. We hope you can participate and are excited to make progress on better understanding dystonia in relationship to CP. With your help, we can prioritize the most important areas to study and hopefully make a difference in outcomes for people with dystonia in CP.