Dr. Laura Gilbert, with shoulder length brown hair and a green shirt, smiles broadly. Her dystonia abstract won her an award

Dystonia Agenda Takes Center Stage at Child Neurology Society Meeting

Laura Gilbert, DO, a pediatric neurologist, with shoulder length brown hair and a dark green shirt, smiles broadly.

Laura Gilbert, DO, has won a Junior Member Award from the Child Neurology Society, for her abstract on a patient-centered dystonia research agenda.

Dr. Laura Gilbert, a pediatric neurologist at St. Louis Children’s Hospital, has been selected to present our Dystonia in Cerebral Palsy patient-centered research agenda at the Child Neurology Society (CNS) meeting in Boston, MA in September 2021.

Her talk, entitled, “Top 10 Areas of Research Need for People with Cerebral Palsy and Dystonia: A Novel Community-driven Agenda,” is based on collaborative work she carried out with the Network to engage the community in a research priority setting process for dystonia in CP in 2020.

“Dr. Gilbert played a significant role in the organization and analysis of our dystonia agenda setting process,” said Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders specialist from Washington University in St. Louis. “She is a smart and savvy burgeoning clinician researcher. It’s been a gift to see her interest bloom in dystonia in CP.”

The Child Neurology Society gathers neurologists annually to advance research and the treatment of pediatric neurological conditions. The live platform presentation has been selected as one of the top 20 abstracts submitted to the meeting. Further congratulations are in order for Dr. Gilbert who will be recognized as one of four Outstanding Junior Members for her work.

Her talk, and talks by her mentor Dr. Aravamuthan, will increase the focus on CP at this year’s CNS meeting. This increased focus will improve child neurologist awareness of issues faced by people with CP and promote research opportunities in the field.

Research CP Dystonia Edition

Don’t miss our 2021 MyCP Webinar Series!

Last year, more than 1,000 people logged on for our MyCP webinar series as we came together as a community to discuss cerebral palsy (CP) research. We are thrilled to announce our webinar series will return in 2021 with our first installment, Research CP: Dystonia Edition Results, scheduled for Tuesday, February 9, at 8 p.m. EST. 

Research CP embodies our efforts to engage stakeholders — community members, advocates, clinician and researchers — to set a research agenda that matters to the community.  It began in 2017 with our inaugural effort to establish the top research questions valued by the community. The result was published in Developmental Medicine and Child Neurology in 2018 and has set the research agenda for the CP Research Network.  In 2019, we launched Research CP: Dystonia Edition. We engaged more 160 people in educational webinars on the topic, community members and clinicians generated a prioritized list of unanswered questions about dystonia in CP

The Research CP: Dystonia Edition Results webinar is the summary of our findings from this initiative to set a patient-centered research agenda for dystonia in CP. It will be presented by CP Research Network Chief Executive Officer Paul Gross, Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist from St. Louis Children’s Hospital in Missouri, Darcy Fehlings, MD, a developmental pediatrician from Holland Bloorview Rehabilitation Hospital in Toronto, Ontario, Canada and Michael Kruer, MD, a pediatric neurologist and neurogeneticist from Phoenix Children’s Hospital in Arizona.

To find out more, please visit our MyCP Webinar Series page and follow the instructions to sign up and secure your Zoom link to the online event. Webinars will also be recorded for later viewing.

Throughout 2021, we will bring you eleven monthly webinars featuring principal investigators from the CP Research Network, sharing concepts, development, and goals from their network research.  We will cover a broad spectrum of CP research ranging from genetics to care of adults with CP. The webinars are available for free to all CPRN community members and clinicians.

We encourage all who have participated in this important ongoing process to attend. We hope to see you there!

Register to Vote

Vote for the Most Important Research Questions for Dystonia in CP!

The Cerebral Palsy Research Network (CPRN) invites you to cast your vote for the most important questions we need to answer about the diagnosis and treatment of dystonia in cerebral palsy (CP).  Register to vote by June 12th at MyCP.org to cast your online ballot the week of June 15, 2020! If you are a member of the patient community or a clinician that treats people with CP, your vote is your chance for your voice to be heard and influence the research agenda for dystonia in CP.

CPRN has had more than two hundred people participate in our education program about dystonia in CP. Research CP Dystonia Edition is an extension of CPRN’s original patient-centered education program and prioritized agenda published in August 2018 in Developmental Medicine and Child Neurology. The goal of this program is to focus attention on this under-researched condition in CP and to generate and publish a patient-centered list of prioritized concerns. 

Research CP Dystonia Edition participants have already created a list of “uncertainties” or questions that need to be resolved through research.  CPRN will open up voting up to the whole CP community – people with CP, caregivers, clinicians, therapists and advocates – for one week in mid-June 2020 to set the priorities.  Community members interested in voting on dystonia in CP research priorities should sign up on MyCP.org to receive voting instructions prior to voting.

CPRN will publish the resultant patient-centered research agenda and disseminate the results broadly to guide researchers in addressing the concerns that are most pressing to the community.  Since its publication in 2018, Research CP is often cited in other publications and research grants to reflect community priorities and steer research efforts to those that are most meaningful to the community. 

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!

ResearchCP Webinar, Bhooma, Darcy, Michael

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.

Webinar 3

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!

Research CP Webinar, Dystonia

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.