Dr. Laurie Glader, Director of the Cerebral Palsy Program at Nationwide Children's, with shoulder length blond hair smiling.

Research CP: Progress Report

Next Wednesday, September 14th, Dr. Laurie Glader will lead a MyCP webinar updating participants on the progress of our patient-centered research agenda established in 2017 through our Research CP program. Research CP was run by the Network with the goal of setting a patient-centered research agenda for CP. It was funded by the Patient-Centered Outcomes Research Institute. The program included a webinar series, a collaborative agenda setting and prioritization process, and concluded with an in-person workshop in Chicago in June 2017. The results of this process, published in 2018 in Developmental Medicine and Child Neurology, can be found on our website. Since that time, the CP Research Network has used the findings from Research CP to guide our research investments and study development.

This webinar will allow the CP community to see the progress that the Network and the creation of the cerebral palsy registry have had on advancing the pace of CP research and answering the questions about CP that were raised through the Research CP program.

After the presentation, Dr. Glader, a developmental pediatrician who directs the CP program at Nationwide Children’s Hospital in Columbus, Ohio and is a member of the CP Research Network Steering Committee, will be available to answer questions from the community about current and future CP research network projects.

The webinar is free and will be recorded for people who cannot attend. Please join us for the presentation and discussion at 8 pm Eastern Time via Zoom. The presentation is open to the public and will have content that is meaningful to community members of all ages, clinician researchers and companies serving the CP community. You may register to receive an invitation to the webinar or a notification of when we post the recording.

Happy New Year 2022 from the CP Research Network with a black background and fireworks in the corners

Happy New Year from the CP Research Network

At the Cerebral Palsy Research Network, we have a lot to be thankful for.  You, our great extended cerebral palsy (CP) community, helped us achieve our fundraising goal of $10,000 this past month for our MyCP webinar series in 2022.  With our board of directors’ matching, we raised more than $30,000 for our network! We are excited to bring our MyCP webinar series back in full swing next week beginning with a live interview of the authors of Pure Grit (details to come out tomorrow).  Thank you to all who contributed and helped to spread the word!

2021 in Review

Last year was transformative in numerous ways for the CP Research Network.  We kicked off the year with the announcement of our merger with CP NOW. The combination of their educational and wellness programming with our efforts led to significant accomplishments including:

 

Our Research and Quality Improvement initiatives made significant progress in both seeking to answer key research questions about CP and improving the treatment of people with CP now.  A few highlights include:

What’s new for 2022?

We have a lot of projects that will culminate in 2022! These include multiple publications of our work in leading journals, partnerships to sustain and grow our wellbeing offerings, continued progress on our research and quality initiatives, and the return of our MyCP webinar series to name a few.

There are lots of ways to stay engaged with us.

Please consider one of these:

All the best to you and the entire CP community for 2022!

 

 

 

 

Dr. Bhooma Aravamuthan, pictured in a white lab coat and dark rimmed glasses, will speak about dystonia in CP

Update on Dystonia in Cerebral Palsy

On Thursday, December 9, at 8 pm ET, the CP Research Network will hold its final MyCP webinar for 2021 to provide an update on our work in dystonia in cerebral palsy. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist at St. Louis Children’s Hospital, and a leader in the network, will present an update on our progress in this important area of research and care.

In 2019, the Cerebral Palsy (CP) Research Network started an effort to build a community centered research agenda for dystonia in CP. Dr. Darcy Fehlings had found that dystonia was significantly under diagnosed in the CP population and that as much as 80% of the people with CP had some degree of dystonia in addition to spasticity.[ref] The presence of dystonia can be challenging and painful for people and often requires different approaches to treatment. Parents expressed frustration in getting an accurate diagnosis that allowed their children get relief from these symptoms. The CP Research Network developed Research CP Dystonia Edition to engage the extended community – caregivers, people with CP, and clinicians – in a dialogue about the most pressing issues needing research in dystonia in CP.

Dr. Aravamuthan leads our quality improvement effort focused on increasing practitioner awareness of dystonia screening for every person with CP. She will describe how this effort addresses a key priority set forth in Research CP Dystonia Edition. She will also describe research concepts that she is developing to directly engage the community to advance dystonia diagnosis. Please join us for the webinar next Thursday evening by signing up at https://cprn.org/mycp-webinar-series/.

A blond woman kneels while speaking with her daughter braided hair in a wheelchair.

Results: Communication and Participation in CP

Kristen Allison, PhD, CCC-SLP. A smiling woman with long blond hair wearing earrings and a light grey sweater.

Kristen Allison, PhD, CCC-SLP, an Assistant Professor at Northeastern, is this month’s featured speaker for the MyCP Webinar Series, presenting the results of her recent study in speech and language for children with CP.

Next Wednesday, November 17, at 8 pm, Kristen Allison, PhD, CCC-SLP, will present the results of her study of Speech and Language Predictors of Participation in Children with Cerebral Palsy, as part of the CP Research Network’s MyCP Webinar series. Dr. Allison received our Research CP grant award in 2019 for her study investigating how speech and language capability affect a child’s quality of life in terms of participation in activities. Attendees of this webinar will learn what she discovered and be able to participate in a live Q&A with Dr. Allison.

“We found that several aspects of a child’s speech and language skills affect how often they participate and how involved they are in social activities.” said Dr. Allison. “Our results highlight just how important effective communication is to quality of life for children with CP!”

Dr. Allison is an Assistant Professor in the Department of Communication Sciences & Disorders and the director of the Speech Motor Impairment & Learning (SMILe) Lab at Northeastern University. The study was hosted and distributed through th CP Research Network Community Registry and data collection was completed in 2020. Dr. Allison will not only share the results of the study but talk about its meaning for both parents of children with CP, but also how the data will be used to inform future research questions.

Community members interesting in learning about the results of Dr. Allison’s research can sign up to receive webinar login instructions. People who have already registered for the whole MyCP webinar series will be sent an invitation with login details prior to the webinar. Note: Our MyCP webinar series now require a Zoom account to sign in. You can get a free Zoom account here.

Small preview image of Dr. Laura Gilbert linking to blog post

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.

A white speech bubble against a green background with the words ‘Let’s talk about CP’ linking to blog post ‘Don’t miss our 2021 MyCP Webinar Series!’

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!

A preview image leading to blog post ‘Vote for the Most Important Research Questions for Dystonia in CP!’

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!

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.