On Thursday, December 9, at 8 pm ET, the CP Research Network will hold its final MyCP webinar for 2021 to provide an update on our work in dystonia in cerebral palsy. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist at St. Louis Children’s Hospital, and a leader in the network, will present an update on our progress in this important area of research and care.
In 2019, the Cerebral Palsy (CP) Research Network started an effort to build a community centered research agenda for dystonia in CP. Dr. Darcy Fehlings had found that dystonia was significantly under diagnosed in the CP population and that as much as 80% of the people with CP had some degree of dystonia in addition to spasticity.[ref] The presence of dystonia can be challenging and painful for people and often requires different approaches to treatment. Parents expressed frustration in getting an accurate diagnosis that allowed their children get relief from these symptoms. The CP Research Network developed Research CP Dystonia Edition to engage the extended community – caregivers, people with CP, and clinicians – in a dialogue about the most pressing issues needing research in dystonia in CP.
Dr. Aravamuthan leads our quality improvement effort focused on increasing practitioner awareness of dystonia screening for every person with CP. She will describe how this effort addresses a key priority set forth in Research CP Dystonia Edition. She will also describe research concepts that she is developing to directly engage the community to advance dystonia diagnosis. Please join us for the webinar next Thursday evening by signing up at https://cprn.org/mycp-webinar-series/.