Preview image linking to blog post ‘Watch the Research CP Dystonia Edition Educational Series’

Watch the Research CP Dystonia Edition Educational Series

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The Cerebral Palsy Research Network (CPRN) released its educational series for Research CP Dystonia Edition on YouTube for public viewing. Research CP Dystonia Edition, a collaboration with CP NOW, is an initiative to set a patient-centered research agenda for dystonia in cerebral palsy (CP). The initiative led off with a three-part webinar series that stands alone as an educational resource. Those webinars have been recorded and posted to CPRN’s YouTube channel.

The webinar series includes the following topics and presenters:

Topic Presenter
Definitions of Dystonia in CP Dr. Bhooma Aravamuthan, Pediatric Neurologist from St. Louis Children’s Hospital and Washington University
A “Care Pathway” for Dystonia in CP Dr. Darcy Fehlings, Developmental Pediatrician from Holland Bloorview Kids Rehabilitation Hospital and University of Toronto
Research and Gaps in Dystonia in CP Dr. Michael Kruer, Pediatric Neurologist from Phoenix Children’s Hospital and University of Arizona

Each webinar is approximately 40 minutes in length and provides invaluable information about the current state of diagnosis and treatment for dystonia in CP. The webinar series is designed for both members of the community with CP and clinicians that treat people with dystonia in CP.

The Research CP Dystonia Edition initiative is an open community effort to define a patient-centered research agenda. If you are interested in joining the initiative, go to the Research CP Dystonia Edition page on CPRN to get additional details or to sign up for the program. The open enrollment period will close on November 30, 2019.

A preview image linking to blog post ‘Learn about Research on Dystonia in CP’

Learn about Research on Dystonia in CP

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The Cerebral Palsy Research Network (CPRN) and its partner CP NOW will be hosting its third webinar – Current Research and Gaps — in its Research CP Dystonia Edition initiative.  Dr. Michael Kruer, a pediatric neurologist and movement disorders specialist at Phoenix Children’s Hospital, will describe the landscape of research and the importance of filling gaps in our knowledge to improve treatments and outcomes.  The webinar will take place at 8 pm ET on Wednesday, November 6, 2019.  The webinar will be recorded as well.  Please register to receive instructions for attending the webinar or watching the recording.

Research CP Dystonia Edition is an initiative to set a patient-centered research agenda for dystonia in cerebral palsy (CP).  It is targeted at members of the community that have lived with dystonia in CP and clinicians and therapists that treat dystonia in CP.   At the conclusion of the webinar series, participants will be invited to help set the priorities for research in dystonia in CP.

Dr. Darcy Fehlings on Dystonia in Cerebral Palsy

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Darcy Fehlings, MD, MsC
Dr. Darcy Fehlings describes the Care Pathway for dystonia in CP.

In last week’s webinar, Dr. Darcy Fehlings, a developmental pediatrician and expert in the treatment of dystonia, offers an in-depth overview of the American Academy for Cerebral Palsy and Developmental Medicine’s Care Pathway for Dystonia in CP. Dr. Fehlings led the team that developed this clinical practice summary covering the diagnosis, care and treatment of dystonia in CP. She also discusses the Hypertonia Assessment Tool (HAT), a practical tool (that she developed), that allows clinicians to efficiently differentiate among spasticity, rigidity and dystonia. As more clinicians learn about the HAT and implement it into their practice, people living with CP and their providers will be in a better position to understand and properly address its symptoms. 

Living with dystonia in CP can be very painful, confusing to identify and difficult to treat. Dr. Darcy Fehlings acknowledges all of these points and presents the current information available to clinicians to best address the symptoms of individuals who have dystonia in CP.

This webinar can be viewed online and is the second in a three-part series called Research CP Dystonia Edition. It runs for approximately 75 minutes (including the Q and A).  More than 100 people have viewed the educational webinars about dystonia in CP since the program began on October 16th 2019. The webinar series lays the educational foundation for completing this initiative’s objective to create a patient-centered research agenda for dystonia in CP. Interested community members, clinicians, therapists and researchers are encouraged to sign up for Research CP Dystonia Edition on MyCP.org.  The process of establishing the research agenda begins in mid-November and is open only to people who have registered at MyCP.org. Or join us for this week’s webinar when Dr. Michael Kruer reviews current research and gaps in knowledge for dystonia in CP!

A small preview image linking to blog post ‘Research CP Dystonia Edition Starts Tomorrow’

Research CP Dystonia Edition Starts Tomorrow

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The Cerebral Palsy Research Network (CPRN) and CP NOW’s latest effort to generate a patient-centered research agenda for dystonia in cerebral palsy kicks off tomorrow, Wednesday, October 16th at 8 pm ET.  Join Pediatric Neurologist Bhooma Aravamuthan, MD, DPhil, Community Advocate Melanie Brittingham and CPRN Chairman Paul Gross, to learn about this innovative program to help establish the most important research questions in dystonia in CP.  Register for the first webinar here.

Gross will kick-off the webinar with an overview of the Research CP process – the webinars, collaborative surveys and discussions – that will result in a list of research questions that the community finds most pressing in dystonia.  Brittingham, a board member of CP NOW and the mother of a child with dystonia in CP, will provide an overview of the community experience with dystonia.  And then Dr. Aravamuthan will lead the participants through the definition of dystonia in CP.  The webinar will be followed by a question and answer session.

Research CP Dystonia Edition is intended for people who have experienced dystonia in CP and clinician researchers who diagnose and treat the condition.  The program consists of a webinar series followed by discussions and collaboration on the most pressing research questions and a voting process involving both community members and clinicians.  The program will be conducted over several months using a series of online tools and forums to garner input and priorities from the extended community.