In the fall of 2019, The Cerebral Palsy Research Network (CPRN) and CP NOW will invite the extended cerebral palsy (CP) community to share its concerns and research questions about dystonia in CP. The Research CP—Dystonia Edition program launch will begin October 16, 2019. It builds upon the original Research CP initiative hosted by CPRN and CP NOW that led to a published patient-centered CP research agenda. This groundbreaking dystonia initiative will begin with a webinar series that provides an overview of the program and the state-of-the-science in treatment and research for dystonia in CP.
Research CP— Dystonia Edition has been organized by CPRN and CP NOW in partnership with leaders in the research and treatment of dystonia including:
- Darcy Fehlings, MD, Developmental Pediatrician at Holland Bloorview Rehab Hospital in Toronto, ON
- Jonathan Mink, MD, PhD, Pediatric Neurologist at the University of Rochester
- Michael Kruer, MD, Pediatric Neurologist at Phoenix Children’s Hospital
- Bhooma Aravamuthan, MD, Pediatric Neurologist at St. Louis Children’s Hospital
The webinar’s four-part series will establish a common base of knowledge about definitions, care, current research and knowledge gaps. Afterward, we will use an online collaborative platform to generate, shape and vote on ideas about what research is needed for dystonia in CP. Discussions will be hosted on CPRN’s MyCP forum. Participants will be recruited from the community of people experiencing dystonia in CP and clinicians interested in treatment, outcomes and research of dystonia in CP. The goal of this program is to publish a research agenda that specifically addresses the most significant concerns of the community about dystonia in CP.
“As a clinician working with children with cerebral palsy and their families, I find dystonia to be one of the hardest aspects to treat” said Darcy Fehlings, MD. “Children often have associated pain with the dystonia and it can make being comfortable during the day and night a big challenge. These are the children I am losing sleep over! Having a collective plan to tackle ‘dystonia’ that incorporates a broad perspective of priorities from many stakeholders to drive a research agenda will represent a significant step forward.”
The importance of improving dystonia treatments is vital to caregivers. “I would love to find the right thing to calm those nightly dystonic leg spasms, but something that doesn’t cause a ‘hangover’ in the morning and doesn’t decrease function” said Jennifer Lyman, mother of a 14 year-old-boy with dystonia.
Community members, clinicians, therapists, researchers and advocates that are already members of MyCP can sign up to participate in Research CP— Dystonia Edition on mycp.org. Dates and details for the webinar series can be found on CPRN.