Dystonia in cerebral palsy (CP) is not well understood but is a vexing condition even when properly diagnosed. The Cerebral Palsy Research Network (CPRN) and CP NOW launched its latest series of webinars called Research CP Dystonia Edition. The first webinar, an overview and definition of dystonia, is now posted for public viewing. The forty-five minute webinar covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP). Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the thirty attendees who included parents of children, people with CP, clinicians and therapists. The webinar includes both the presentation the Q&A for those who are interested.
Research CP Dystonia Edition builds on the process established by the first Research CP program that concluded in 2018 with the journal publication of Setting a patient-centered research agenda for cerebral palsy. Last week’s webinar was the first in a three part series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge. The webinar series will be followed by a collaborative idea generation and voting process to set a research agenda specifically for 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. CPRN will pursue research questions prioritized by this process.
There is still time to get involved in the process! Clinicians and community members can register for the next webinar entitled “A ‘Care Pathway’ for Dystonia” presented by Dr. Darcy Fehlings on October 30, 2019. 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.