As of today, the CP Research Network is pleased to announce the launch of our Dystonia in CP (DCP) Toolkit, one of the first comprehensive resources about DCP for people with CP and their families and caregivers. The DCP Toolkit provides an overview of dystonia in cerebral palsy, a movement disorder that is part of the dyskinetic CP group (dystonia, chorea and athetosis) and affects 70 percent of people with CP. Our Toolkit includes current information about screening, general care and treatments for dystonia, as well as targeted research efforts. We are adding this greatly anticipated resource to our curated collection of existing dystonia in CP educational webinars along with an extraordinary community video capturing diverse experiences of dystonia in CP. We have a little something for everyone, and our website has been updated with a new dystonia section that includes links to all of these related resources.

By working together and sharing information from resources like our DCP Toolkit, people with CP and their families can learn more about the conditions that affect them. That knowledge allows them to bring concerns and questions to their medical teams, who can then access important information and can learn about the state of research and new clinical strategies to improve the care and treatment of people with DCP. Together everyone can help bridge gaps in knowledge!

How did the CP Research Network begin its focus on dystonia research, care and treatment?

Our dystonia efforts began when a curious parent and member of our Community Action Committee asked why she never heard much about DCP research and why it was rarely mentioned during her son’s medical and therapy visits. She said that it seemed like a lot of families were affected by it but there weren’t any resources available to help them. When presenting this perspective to CP researchers they whole heartedly agreed with her and our exploration of DCP and the state of science began.

What dystonia research has been published in tandem with our CP Research Network efforts?
View a list of all of our current publications including DCP publications

Clinical and community resources about Dystonia in CP:

1. If you aren’t currently a member of MyCP, you can sign up to access our new Dystonia in CP Toolkit. Current members may view a free digital copy of the DCP Toolkit after logging into MyCP
2. Check out our community video about diverse experiences with dystonia in CP
3. Listen to our recent webinar offering details about the efforts put into place as a result of Research CP Dystonia Edition:
4. Look through our educational webinars from our Research CP Dystonia Edition program: and more of our related videos and webinars on our Youtube channel

Clinicians can also visit the AACPDM website to access their updated dystonia in CP care pathway. The dystonia in CP care pathway is designed to provide professionals with the state of science and resources for screening, diagnosing and treating dystonia in CP. There is also information about the quality and type of research and knowledge sharing that currently exists to guide clinical care.

Finally, we want to thank everyone who has participated in our dystonia efforts as well as Neurocrine Biosciences, the sponsor of our community educational video and the new DCP Toolkit. We had an extraordinary team of physicians, therapists, people with CP, family members, researchers and other professionals. By sharing your experiences and observations of dystonia in CP, you have helped us move forward together. Knowledge is constantly in progress. As we learn more about DCP and new research is published and distributed among our network and beyond, the care and treatment goals for our community will continue to move ahead.

Please contact our office manager Cori Sparks if you wish to order printed copies of The Dystonia in CP Toolkit, introductory postcards or any other CP Research Network materials.