New to cerebral palsy, or experienced, our education section offers updated information about the care, treatment, and facts, for both children and adults.

Preview of the Cerebral Palsy Research Network and MyCP logos linking to blog post ‘CPRN Launches Community Education Webinars’

CPRN Launches Community Education Webinars

The Cerebral Palsy Research Network (CPRN) has announced a new community education webinar series focused on its findings and directions in research for cerebral palsy (CP).  One webinar per month will be presented by the principal investigator conducting the research and be followed by an open Q&A.  Interested participants must sign-up. These webinars will not only provide the community with an excellent opportunity to learn about important new research projects but also to interact with the clinician researchers conducting these studies.  Webinars will occur on weeknights at 8 pm ET.

The first webinar, scheduled for Wednesday March 25, is focused on the preliminary findings about adult health and wellbeing from the adult registry that was launched last year.  It will be presented by Dr. Mary Gannotti, a professor from the University of Hartford and the co-chair of the CPRN adult study group, who has led the development of the study in conjunction with several clinicians who treat and study adults with CP in addition to help from the CPRN Adult Community Advisory Committee.

The webinars scheduled for the rest of the year include:

Date Subject Speaker
April 23 Report from the CPRN Clinical Registry Garey Noritz, MD
May Cerebral Palsy and Epilepsy Adam Ostendorf, MD
June Practice Variation in Spasticity Management for Diplegics Paul Gross
July Functional Improved Related to Spasticity Treatments Kristie Bjornson, PT, PhD
August Practice Variation in Spasticity Management for Children who are not Ambulatory Sruthi Thomas, MD, PhD
September CP Genetics Michael Kruer, MD
October Speech and Participation Kristen Allison, PhD
November Family Attitudes About CP Diagnoses Bhooma Aravamuthan, MD, DPhil

MyCP is a web portal that provides the extended community of people with CP including caregivers and providers an open forum to discuss research, participate in research and read about the latest efforts led by CPRN. It is owned and operated by CPRN.

Deadline Extended: Research CP Dystonia Edition

The Cerebral Palsy Research Network (CPRN) extended the registration deadline for Research CP Dystonia Edition until Friday, December 13, 2019.  This extension means that people with an interest in dystonia in cerebral palsy (CP) – either members of the community or clinicians that treat people with dystonia in CP – can still join the research initiative to set a patient-centered research agenda for the condition!  The program requires participants  to watch three informational webinars about dystonia: definitions of dystonia, a dystonia care pathway and current research. The webinars total two hours of content delivered by leaders in the care, treatment and research of dystonia in CP. For existing participants, this extension gives more time to complete the program by viewing the remaining webinars over the next two and half weeks.

Webinar Survey
Overview and Definition Survey 1
A Care Pathway for Dystonia in CP Survey 2
Current Research and Gaps Survey 3

After viewing all three webinars, participants will be invited to submit their uncertainties or questions about treatment and research for dystonia in CP.  “Uncertainties” can be any question that participants have that they believe requires further research. These questions may be related to diagnosis, treatment recommendations, causes or long-term outcomes.  Next, in order to set the patient-centered research agenda, there will be a voting process on the proposed uncertainties and their importance. Although participants are not required to submit uncertainties in order to participate in the voting process, uncertainties must be submitted by December 13, 2019. The voting process to set the research agenda for dystonia in CP will take place in early 2020.

Want to join the Research CP Dystonia Edition initiative? Sign up on MyCP.org. Already a member of MyCP.org? Login in to automatically be enrolled!

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

Watch the Research CP Dystonia Edition Educational Series

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

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

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!

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!

A preview image linking to blog post ‘Research CP Dystonia Edition Available for Viewing’

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. 

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

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. 

CPRN and CP NOW Partner on Dystonia Research

Sign-up for Research CP Dystonia Edition

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 and researchers that are interested in participating in Research CP— Dystonia Edition can sign up at mycp.org.  Dates and details for the webinar series can be found on CPRN.

Be Heard! Join MyCerebralPalsy.org

MyCerebralPalsy.org (MyCP)

MyCerebralPalsy.org (MyCP)

The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org (MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:

  1. the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
  2. the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
  3. Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.

The CPRN Community Registry allows members of the community to participate in confidential surveys about their experience with CP. This information is used by CPRN researchers to understand the natural history of CP to generate new knowledge for future research and enhancements to services for people with CP. It also allows CPRN to find members of the community who want to participate in clinical trials or other studies. All information gathered in the CPRN Community Registry is stored securely at the University of Utah under the guidance of the University of Utah ethics board (institutional review board).

The MyCP forum provides member to member discussions about important research topics such as “what is the most pressing thing to study in CP?” MyCP members includes people in the community with CP, their caregivers, advocates, clinicians and researchers. All identities are protected and the discussions are not accessible by non-members or search engines. MyCP discussions help direct the course of research at CPRN.