CPRN Studies :: My Cerebral Palsy

Archive for CPRN Studies

MyCP Launches Webinar Series

Posted on March 23, 2020

The Cerebral Palsy Research Network (CPRN) has announced a new webinar series to educate the community on its findings and directions in research. It will offer one webinar per month to provide an update on its current research. The webinars will be presented by the principal investigator conducting the research and include 20 minutes of presentation and 20 minutes of open Q&A. Interested participants must sign-up for the webinar. These webinars will not only provide an excellent opportunity to learn about important new study topics but also to interact with the clinicians conducting these research projects. Webinars will occur on weeknights at 8 pm ET.

The first webinar, scheduled for Wednesday March 25, is focused on the preliminary findings from the adult registry that was launched last year. It will be presented by Dr. Mary Gannotti 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:

Subject	Speaker	Date
Preliminary Report from the CPRN Adult Registry	Mary Gannotti, PT, PhD	Wednesday, March 25, 8 pm ET
Report from the CPRN Clinical Registry	Garey Noritz, MD	April
Cerebral Palsy and Epilepsy	Adam Ostendorf, MD	May
Practice Variation in Spasticity Management for Diplegics	Paul Gross	June
Functional Improved Related to Spasticity Treatments	Kristie Bjornson, PT, PhD	July
Practice Variation in Spasticity Management for Children who are not Ambulatory	Sruthi Thomas, MD, PhD	August
CP Genetics	Michael Kruer, MD	September
Speech and Participation	Kristen Allison, PhD	October
Family Attitudes About CP Diagnoses	Bhooma Aravamuthan, MD, DPhil	November

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.

CPRN Studies

Functional Improvement Related to Spasticity Treatments (FIRST)

Posted on March 14, 2020

by Paul Gross

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Approximately one-third of the children born with cerebral palsy (CP) have both legs affected yet can walk either independently or with a walker. The most common CP movement disorder in these children is spasticity hence many receive botulinum toxin A (BTA) injections to temporarily relieve the effects of spasticity. Some smaller percentage of these children go on to get a significant neurosurgery called selective dorsal rhizotomy (SDR) in an attempt to permanently remove that spasticity as it interferes with their functional abilities. While both of these treatment paradigms have been rigorously tested to determine their benefit, the most common treatment protocols have never been compared. The Cerebral Palsy Research Network (CPRN) applied to the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), for a large grant this past February to compare these treatment paradigms. Functional Improvement Related to Spasticity Treatments (FIRST) has been in the planning stages for several years. FIRST, if funded, would be conducted with children being seen at 25 clinical centers across North America. FIRST seeks to compare how well children walk after receiving serial BTA injections to those that go on to receive an SDR.

Several CPRN investigators worked on the development of FIRST which was submitted by three co-principal investigators including Kristie Bjornson, PT, PhD from Seattle Children’s Hospital, Paul Gross from the University of Utah and Jeffrey Leonard, MD from Nationwide Children’s Hospital. FIRST plans to enroll 1624 subjects across the 25 sites. The study design is observational in nature (patients are not assigned to interventions). The observational design is important because it enables the testing of effectiveness of interventions in the real world clinical practice. The particular funding opportunity at NINDS to which this grant was submitted was specifically created to accommodate observational studies for conditions like CP.

The review process at NIH is thorough but also lengthy. The study team does not expect a funding decision before the Fall of 2020. But the process of assembling the study team, gathering preliminary data from the network and developing an application of this scale was a success in of itself. It demonstrated the deep commitment of the CPRN site investigators to improve outcomes for people with CP.

CPRN Studies, New CP studies

CP NOW funds new CPRN study about speech and participation in cerebral palsy

Posted on November 15, 2019

by Paul Gross

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Guest post by CP NOW President and CPRN Community Engagement Director Michele Shusterman

We are proud to announce that Dr. Kristen Allison has been selected to receive CP NOW’s Research CP Award! Dr. Allison is an Assistant Professor in the Department of Communication Sciences & Disorders at Northeastern University and is the Director of their Speech Motor Impairment and Learning Lab (SMILe). She has extensive experience working with children who have neurodevelopmental disabilities as both a therapist and researcher, and is passionate about improving speech and communication outcomes for the cerebral palsy (CP) community. Through this award, Dr. Allison would like to urge the development of more personalized and participation-focused approaches to speech-language interventions for people with CP. She also aims to equip parents and caregivers with information to help them better advocate for the most impactful speech-language services.

CP NOW partnered with the Cerebral Palsy Research Network (CPRN) to create this grant award. Our goal was to advance the community’s research priorities identified through our Research CP program. We invited researchers to submit proposals up to $30,000 that would advance the Research CP agenda while also supporting the strategic goals of both CP NOW and CPRN. Dr. Allison’s proposal best met our conceptual criteria while scoring the highest for overall scientific impact. We are particularly excited to support Dr. Allison’s work in the area of communication because of the lack of research in this field, and its potential to improve the lives of those with CP and their families.

Dr. Allison’s project addresses two of the key questions identified by the Research CP initiative:

“How do we best maximize functional independence and life participation of children and adults with CP?”
“Which interventions are associated with better functional outcomes, controlling for GMFCS level, age, and comorbidities?”

How does Dr. Allison’s project relate to these Research CP questions?:

“Communication is an essential and understudied component of independence, life participation, and functional outcomes for individuals with CP. Over half of children with CP have communication impairments that negatively affect their social participation and quality of life. Despite the frequency of communication difficulties among children with CP, there is a critical lack of knowledge regarding how children’s speech and language profiles influence their participation in social activities and interactions. This knowledge is essential for designing speech-language interventions that maximize participation and quality of life for children with CP. This research would advance these research priorities by improving understanding of how communication profiles of children with CP relate to participation in life situations. This would provide the foundational knowledge needed to develop effective speech language interventions for children with CP.”

What led Dr. Allison to focus on communication research in CP and why is the CP NOW award important to her work?

“My interest in communication outcomes for children with motor disorders stemmed from my clinical work as a speech language pathologist at Kennedy Krieger Institute (KKI) in Baltimore, where I worked from 2005-2011 and treated children with various developmental and acquired neurological disorders, including many children with CP. The majority of children on my caseload had motor disorders that affected their speech production and functional communication, and I found little evidence to guide treatment decisions.”

“Universally, parents talk about the importance of communication to their child’s ability to make friends, participate in school and recreational activities, and to their eventual independence. My prior research has largely focused on understanding the speech and language presentations of children with CP and identifying factors that relate to speech intelligibility, and I want to expand that work to better understand how communication factors affect participation. I believe that better understanding the participation barriers that result from communication impairments will help pave the way for development of speech-language treatments that more effectively maximize functional communication outcomes for children with CP.”

Why does Dr. Allison feel that having answers to her research questions are important to the CP community?

“Caregivers, physicians, and speech-language pathologists need to understand differences in the participation barriers faced by children with different communication profiles <ie augmentative communication device users versus individuals with speech who are more difficult to understand> in order to effectively work as a team to help children with CP surmount these barriers and reach their potential. This project aims to generate information that medical professionals and caregivers can use to better identify children with CP at the greatest risk of participation restrictions due to their communication impairments, and help prioritize speech-language therapy goals most important to maximizing participation.”

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Congratulations to Dr. Allison! We are grateful for her commitment to the CP community and to individuals with CP and their families who have struggled to find meaningful communication solutions. CP NOW is grateful to all of you who helped make this project possible and who continue to help us meet our mission to optimize the lifelong health, wellness, and inclusion of people with cerebral palsy and their families.

CPRN Studies, New CP studies, Research CP

Research CP Dystonia Edition Kickoff

Posted on October 24, 2019

by Paul Gross

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Dystonia in cerebral palsy (CP) is not well understood but is a vexing condition even when properly diagnosed. The Cerebral Palsy Research Network (CPRN) and CP NOW launched its latest series of webinars called Research CP Dystonia Edition. The first webinar, an overview and definition of dystonia, is now posted for public viewing. The forty-five minute webinar covers an overview of the Research CP Dystonia Edition initiative and the definition of dystonia in cerebral palsy (CP). Following the presentation, Dr. Aravamuthan, a movement disorders trained pediatric neurologist from Washington University, answered questions from the thirty attendees who included parents of children, people with CP, clinicians and therapists. The webinar includes both the presentation the Q&A for those who are interested.

Research CP Dystonia Edition builds on the process established by the first Research CP program that concluded in 2018 with the journal publication of Setting a patient-centered research agenda for cerebral palsy. Last week’s webinar was the first in a three part series intended to educate the extended community on the state of dystonia in CP including standards of care, current research and gaps in knowledge. The webinar series will be followed by a collaborative idea generation and voting process to set a research agenda specifically for 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. CPRN will pursue research questions prioritized by this process.

There is still time to get involved in the process! Clinicians and community members can register for the next webinar entitled “A ‘Care Pathway’ for Dystonia” presented by Dr. Darcy Fehlings on October 30, 2019. 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.

CPRN Studies, Research CP

CPRN and CP NOW Partner on Dystonia Research

Posted on October 5, 2019

by Paul Gross

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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, therapists, researchers and advocates that are already members of MyCP can sign up to participate in Research CP— Dystonia Edition on mycp.org. Dates and details for the webinar series can be found on CPRN.

CPRN Studies, New CP studies, Research CP

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Archive for CPRN Studies

MyCP Launches Webinar Series

Functional Improvement Related to Spasticity Treatments (FIRST)

CP NOW funds new CPRN study about speech and participation in cerebral palsy

Research CP Dystonia Edition Kickoff

CPRN and CP NOW Partner on Dystonia Research

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