Research CP Awarded Investigator Publishes on Speech and Language

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Congratulatoins to Dr. Allison whose research, funded by the CP Research Network, was recently published in the American Journal of Speech-Language Pathology.

We are thrilled to congratulate Kristen Allison, PhD, CCC-SLP on her recent publication, “Relation of speech-language profile and communication modality to participation of children with cerebral palsy,” in the American Journal of Speech Language Pathology on January 12, 2024. This is the twelfth publication for the network and, is the result of research funded by the CP Research Network for its Research CP grant program in 2019. It provides a unique analysis of the effects of speech and language impairments on participation for children with CP.

Dr. Allison directs the SMILE Lab at Northeastern University where she studies speech motor impairment and its effect on children. In 2019, the CP Research Network ran a competitive award program to advance research addressing important issues from our Research CP patient-centered research agenda. Dr. Allison’s proposed study Speech and Language study was the top ranked submission and was awarded the funding.

The study, conducted in part through our Community Registry hosted on MyCP, engaged parents to assess and understand their children’s speech and communication skills in conjunction with their participation in various life events. Participation was identified as a key issue in our Research CP program. Using validated parent reported measures of speech and language capabilities combined with assessment of the child’s involvement in activities, Dr. Allison was able to determine important new findings that could improve a child’s participation, a key component to quality of life. A significant conclusion of the research was that early intervention with augmentative and alternative communication devices for certain children could improve participation opportunities.

Dr. Allison presented her preliminary findings in a MyCP webinar in 2020. Her final manuscript is available to subscribers of the American Journal of Speech Language Pathology or to members of the MyCP platform
(You must be logged into your MyCP account. )

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Webinar: Priorities in Adult Cerebral Palsy Research

Professional headshots of four investigators smiling for a cerebral palsy adult study.

Drs. Sarmiento, Gannotti, Hurvitz, along with Jocelyn Cohen, will present on priorities in adult CP research.

Next month’s MyCP webinar will focus on a new study that we are conducting to establish priorities in research about adults with cerebral palsy (CP). The webinar will be held on Wednesday, December 6 at 8 pm ET. It will be led by CP Research Network principal investigator Cristina Sarmiento, MD. Dr. Sarmiento and her colleagues Jocelyn Cohen, JD, Mary Gannotti, PT, PhD, and Ed Hurvitz, MD, will present their plans for a study that was funded by our new Accelerator Award program made possible by our partner Cerebral Palsy Alliance Research Foundation.

In 2017, the CP Research Network was funded by the Patient-Centered Outcomes Research Institute to engage the community in creating a patient-centered research agenda. The program included a series of educational webinars followed by a collaborative idea generation process. This led to the creation and ranking of the most important questions to study in CP. A group of 45 people split between community members and physician researchers, gathered in Chicago in June 2017 to finalize the agenda. That agenda referred to as Research CP, was published in 2018 and has been a key driver of research conducted within the network. Many of the top-ranking themes were about adults, aging, functional decline, pain, and exercise to maintain functional abilities. This new study will again engage the community but in a different format that leverages focus groups to dive deeper into the research questions that underlie the themes that have been identified and prioritize them for clinical study.

This upcoming webinar will provide an overview of the planned study and discuss how members of the community can engage in the process. We will leave a significant amount of time for questions and answers with the entire study team. If you are interested in joining us, you must register in advance (though MyCP Webinar subscribers will automatically be sent the link to join the webinar). The webinar will also be recorded and posted to our YouTube channel within 24 hours.

Award: Study of Pain in Adults with Cerebral Palsy

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Cerebral Palsy Research Network leaders Drs Bailes and Gannotti will lead a study of adult pain classification funded by CPARF.

The Cerebral Palsy Research Network has been awarded funds for a three-year study in the classification of pain for adults with cerebral palsy (CP). This study was the subject of October’s MyCP webinar. Classification of pain in adults is fundamental to identifying proper treatments and improving outcomes. Congratulations to co-principal investigators Amy Bailes, PT, PhD and Mary Gannotti, PT, PhD who will lead the team which includes the rest of the members of the Adult Care Quality Improvement.

The CP Research Network applied to Cerebral Palsy Alliance Research Foundation (CPARF) for this award earlier this year. CPARF’s research funding was a very competitive cycle this year and we are honored to receive this funding to advance our essential study of pain in adults with CP. We expect that this work will have a very broad impact on adult care by beginning to address pain, one of the most important issues identified through our Research CP program — our community created research agenda.

The study team comprises clinician investigators from Columbia University, Nationwide Children’s Hospital which has an adult outpatient clinic, University of Michigan, and the University of Colorado. This team has already demonstrated that it can improve the care of adults across multiple centers with its Adult Care QI initiative. This effort led to a substantial increase in the assessment of pain across participating CP Research Network centers from 24% of the time to over 90% percent of visits. Now the group is planning the next important step in the systematic treatment of pain – classifying it accurately as a critical step to effective treatment. The study will begin with a Delphi process to identify the best tools to classify pain during a clinical visit. The appropriate classification of an individual’s pain will enable clinicians to choose the most appropriate treatments.

We look forward to the successful execution of this grant and transforming how pain is treated in adults. People interested in the background for the study can watch October’s MyCP webinar with the study team. Adults wanting to participate in our research should either join MyCP to regularly contribute your lived experience to our research or take our initial adult study of wellbeing and pain.

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Priorities in Adult Cerebral Palsy Research

Professional headshots of four investigators smiling for a cerebral palsy adult study.The Cerebral Palsy Research Network, in partnership with Cerebral Palsy Alliance Research Foundation (CPARF), has awarded its first Accelerator Award, a new internal funding program supported by CPARF to advance critical research questions more quickly. This particular award will be used to prioritize research questions about adults with cerebral palsy (CP). The study, entitled “Priority Setting for Multi-center Research Among Adults with CP” will be conducted by leading investigators focused on adult research – Cristina Sarmiento, MD, (principal investigator), Ed Hurvitz, MD and Mary Gannotti, PT, PhD (consultants) in partnership with Jocelyn Cohen, a community member co-investigator. The study team will lead a series of focus groups around the country to gather input from the community about which health concerns are most pressing to them. This study will build upon the original patient-centered research agenda created through the Research CP program.

The main objectives of this award are to develop a community prioritized set of questions to research through a multi-center clinical trial. The priority setting process will use qualitative methods (a process to find common themes in transcribed answers from focus group participants). Participating community members will be drawn from the CP Research Network’s MyCP community engagement platform and from the CPARF community. They will be involved in every stage of the research process and will have the opportunity to be co-investigators for the study that follows.

Our December webinar will feature the investigative team for this grant. They will provide a more in-depth overview of the planned research and how community members may become involved. This will be a separate webinar from this evening’s webinar on pain classification though it will feature some of the same speakers. Subscribers to our MyCP webinar series will receive an email with the webinar instructions when it is announced in December.

The Top 10 Themes in Dystonia in CP Research

Laura Gilbert, D.O. A broadly smiling woman with shoulder-length dark brown hair wearing a forest green shirt.

Dr. Laura Gilbert, winner of the Child Neurology Society 2021 Junior Investigator award, will present the top 10 research themes in dystonia in CP.

Next month’s MyCP webinar will feature Dr. Laura Gilbert, pediatric neurologist from Washington University who will be presenting the top 10 themes in dystonia in cerebral palsy (CP) research on Tuesday, November 1, at 8 pm ET. Dr. Gilbert will be joined by Dr. Bhooma Aravamuthan, leader of the CP Research Network’s dystonia in CP study group and quality improvement initiative. Dr. Aravamuthan was recognized earlier this month by the Child Neurology Society with the Dodge Award for her work as an outstanding young researcher.

Earlier this year Dr. Gilbert was the lead author on a paper released in the journal Neurology that included these 10 themes (an abbreviated list is below). In 2020-2021 she participated in the study group that led the CP Research Network’s community driven program called Research CP: Dystonia Edition. This team engaged community members and clinicians in a process that included educational information about dystonia and the generation and prioritization of research questions about dystonia in CP.

Dr. Gilbert’s manuscript and presentation won the CNS Young Investigator Award presented at their annual meeting in Boston in 2021. Her platform presentation reviewed both the process and the results of the community-centered research agenda.

Dystonia Top 3 (of 10) Priorities for Research as determined through Research CP Dystonia Edition:

  1. Develop new treatments for individuals with dystonia in CP,
  2. Assess rehabilitation and psychological approaches to manage dystonia,
  3. Comparative effectiveness of pharmacological and surgical treatments for dystonia (including
    evaluation of side effects, the person’s overall function and impact on individualized goals).

People interested in joining the webinar should register in advance on CPRN.org. MyCP webinar subscribers will be sent a link to the webinar several days in advance. The webinar will also be recorded for later posting to our YouTube channel.

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CPRN Partners with Pitt

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The Epidemiology Data Center at the University of Pittsburgh will host the CP Research Network registries.

The Cerebral Palsy (CP) Research Network signed a strategic five-year research agreement with the University of Pittsburgh to provide the Data Coordinating Center (DCC) services for its growing research enterprise. Stephen Wisniewski, PhD, Professor, Co-Director of their Epidemiology Data Center, and Vice Provost for Budget and Analytics at the University of Pittsburgh, will become the DCC principal investigator for the CP Research Network effective October 1, 2022. The DCC provides essential research services for hosting our registries, designing our studies, and safeguarding our data. The partnership with the University of Pittsburgh will help the CP Research Network accelerate its mission to improve the lifelong health and wellness of people with CP and their families through high quality research.

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Dr. Stephen Wisniewski will lead Data Coordinating Center team at the University of Pittsburgh for the CP Research Network

“We are excited to be partners in research with the CP Research Network,” said Dr. Wisniewski. “Between their track record for engaging the extended CP community in research and our experience with multi-center trials, we believe we can help accelerate studies to improve outcomes in CP. We look forward to working closely with the CP Research Network to develop studies for the research questions that are most important to the CP community.”

The CP Research Network selected the University of Pittsburgh and Dr. Wisniewski as its new DCC partner to support its anticipated growth in research projects. Dr. Wisniewski’s track record with the ADAPT observational trial for traumatic brain injury and other successful publicly funded trials make him, his team and the University of Pittsburgh an ideal partner for the next phase of the CP Research Network’s research agenda. As the network nears the end of its second year of its five-year strategic plan, the number of studies under development to address its Research CP community-driven agenda has grown significantly. The CP Research Network’s registries, both central longitudinal research repositories capturing data about people with CP over multiple years, were recently highlighted during a workshop sponsored by the National Institutes of Health to report on and advance its strategic plan for cerebral palsy. The CP Research Network strategy calls for more publicly funded studies of CP for which Dr. Wisniewski and his DCC’s track record with NIH and other funders should increase the network’s success rate for grants and ultimately improving care for people with CP.

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/.

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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.