Cerebral Palsy Research Network Blog

Archive for October 2019

Sign Up: A Care Pathway for Dystonia in CP

The Cerebral Palsy Research Network (CPRN) and CP NOW invite you to join us on tonight, Wednesday, October 30, 2019 at 8:00 pm ET for a webinar with Dr. Darcy Fehlings to learn about the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) ‘Care Pathway’ for dystonia in cerebral palsy (CP).

The dystonia care pathway summarizes existing tools for the diagnosis of dystonia in CP and the latest evidence about the care and treatment for this condition. Dr. Fehlings led the team who developed this information. Dr. Fehlings also co-developed a clinical tool to identify dystonia which is called the Hypertonia Assessment Tool (HAT). Dr. Fehlings’ research has demonstrated that dystonia is far more common in CP than previously thought. 

This webinar is the second in the three-part series for Research CP Dystonia Edition. It will run for approximately 45 minutes and be followed by 30 minutes of questions and answers. Our target audience is community members experiencing dystonia in CP and clinicians and therapists that treat dystonia. Participants who listen to all three webinars will be invited to participate in developing a formal research agenda for dystonia in CP.

Community members and providers interested in participating should read the details of Research CP Dystonia Edition. Or just sign up for the webinar!

Research CP Dystonia Edition Available for Viewing

Dystonia in cerebral palsy (CP) is not well understood. The Cerebral Palsy Research Network (CPRN) and its strategic partner CP NOW are sponsors of a program called Research CP, which is a collaborative group of CP community stakeholders trying to make a difference in CP research.  The latest series of webinars is called Research CP Dystonia Edition and the first webinar was last week.  It is now posted for public viewing.  The webinar presentation is 45 minutes and covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP).  More than fifty participants watched the webinar. Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the 30 live attendees who included parents of children, people with CP, clinicians and therapists.

The introductory webinar for Research CP Dystonia Edition is the first of three in a series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge.  People that attend or watch the webinar series will be invited to collaborate in an agenda setting process to determine the most important questions to be researched about 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.  In addition to broadly sharing the results of the process, CPRN will use the finalized agenda to drive its future research efforts related to dystonia in CP.

There is still time to get involved in the process!  Clinicians and community members can sign up at MyCP to participate in future webinars. The first webinar is available for viewing here.  The next webinar, entitled “A ‘Care Pathway’ for Dystonia” will be presented by Dr. Darcy Fehlings on October 30, 2019.  If you haven’t registered for the second webinar, you can do so here.  Please note that in order to participate in setting the research agenda, you must watch all three webinars prior to November 11, 2019 when the agenda setting will begin.  You don’t have to watch them live as they are recorded and can be replayed.  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. 

Research CP Dystonia Edition Starts Tomorrow

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.