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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:

  1. “How do we best maximize functional independence and life participation of children and adults with CP?”
  2. “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 Webinar #1

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 Research CP 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
Boy with dystonia in CP enjoys boating

CPRN and CP NOW Partner on Dystonia Research

Posted on October 5, 2019
by Paul Gross
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Sign up for Research CP Dystonia Edition!

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, 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

CPRN Approves Four New Study Concepts

Posted on May 18, 2019
by Paul Gross
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The Cerebral Palsy Research Network (CPRN), owner of MyCerebralPalsy.org and network of hospitals and universities collaborating on advance cerebral palsy research, approved four new study concepts in the past month. Study concepts are a significant milestone in advancing CPRN’s multi-center research. An approved concept is developed in to a complete study and grant application in the months following a concept approval.

The concept areas included two focused on spasticity management — one for kids that can walk (including with assistance) and another for kids that require wheel chairs for mobility. A third is focused on physical therapy (PT) dosage after single event multi-level surgery — a surgery in which bones are de-rotated and muscles are lengthened — to find the optimal does of PT to have the best outcome. The forth is focused on body composition across the lifespan and alternative measurements of strength which is an important indicator of outcomes and abilities.

While these are just at the concept phase, several of these concepts are seeking grant funding this fall. These studies will complement the six studies CPRN already is conducting in cerebral palsy including our recently launched adult study that is based here in MyCP. To keep a closer watch on the efforts of CPRN, you can follow our work here.

New CP studies

CPRN Launches Study of Adults with CP

Posted on April 7, 2019
by Paul Gross
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The Cerebral Palsy Research Network (CPRN), owner of MyCerebralPalsy.org, launched a study of adults with CP this past week. There are no studies that provide a comprehensive understanding of the affects of aging with CP from the perspective of the population of people with CP. The study is open to all adults (18 years or older) signed up for MyCP after completing the consent on the MyCP Surveys page. The study begins with a series of questions about health and well being, employment status, and function abilities. If participants have had chronic pain, the study offers a series of questions on experiences with pain. Overall, the surveys can be completed in approximately 20 minutes. All of the information is confidential and stored on HIPAA compliant, secure servers at the University of Utah.

This study was developed by the CPRN Adult Study Panel — a panel of clinician researchers who treat adults with CP. The group consulted extensively with the CPRN Community Advisory Committee to develop the study concept. CPRN seeks to enroll 500 participants in the study over the next few years. The analysis of this data should reveal significant findings about the adult population with CP compared against the population on the whole. These findings should provide tremendous support for health care planning, insurance and future research studies.

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New Phase III trial for early intervention after infant stroke

Posted on March 28, 2019
by Paul Gross
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This new NIH funded grant is a very important step in taking the relatively new findings from early detection of cerebral palsy to early intervention. Great work has been done by our friend and advisor Dr. Iona Novak, to strengthen the case for early detection of cerebral palsy and these best practices of early detection are in the early stages of being established at sites around the world.

But what interventions matter, if a brain injury with a high correlation to cerebral palsy is detected? For one type of cerebral palsy, this study may provide the evidence base for an important answer. Dr. Adam Kirton, a pediatric neurologist from Alberta Children’s Hospital in Canada says “Congenital hemiplegia is the most common form of cerebral palsy in children born at term, and stroke is the number one cause” in article entitled “Cerebral palsy secondary to perinatal ischemic stroke” published in Clinical Perinatology in June 2006. Dr. Ramey and Dr. Lo, the Co-Principal Investigators on this trial called I-AQUIRE, have received significant funding to arrive at the answer to what intervening with therapy can do for these young stroke victims.

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Research CP Webinar Tonight!

Posted on March 26, 2019
by Paul Gross
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The Cerebral Palsy Research Network (CPRN) will be hosting a webinar to provide an update on Research CP this evening, Tuesday, March 26 at 7 pm ET. The webinar will provide a brief overview of the Research CP initiative and a bit more detail on the workshop results but we recommend that participants read the published paper prior to attending or watching the webinar recording. The webinar will then focus on the accomplishments since the completion of the Research CP workshop in June of 2017 including dissemination of the results and new research efforts that have been started as a result.

We will officially launch MyCerebralPalsy.org (MyCP) as part of the webinar. Thanks for all your help in testing MyCP. We hope to significantly build the community of participants from this point forward including discussions about research, further priority setting and building the CPRN Community Registry for expanded research into the impact of CP on people’s lives. If you want to join the webinar and you haven’t already signed up, please sign up here.

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Research CP Published!

Posted on September 1, 2018
by Paul Gross
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Setting a Patient-Centered Research Agenda for Cerebral Palsy

Setting a Patient-Centered Research Agenda for Cerebral Palsy

The Cerebral Palsy Research Network (CPRN) is excited to have its first published research manuscript. Setting a Patient-Centered Research Agenda for Cerebral Palsy is available in Developmental Medicine and Child Neurology. And even better it is open to the public free-of-charge so that it is available to all in the CP community! Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), is a collaboration between CPRN and CP NOW, a nonprofit focused on education and research for people and families living with CP. Research CP started in March 2017 with a series of educational webinars, online polls to establish a research agenda and culminated in a face-to-face workshop in Chicago, Illinois in June 2017.

With broad participation from the extended community of people with CP, caregivers of children and adults with CP, the medical provider community, and community advocates, Research CP sought to establish a deep dialogue about what questions were most pressing that could be addressed through high-quality biomedical research. The initiative produced a list of 16 top research ideas and a wealth of other important criteria for CPRN and other clinical researchers to prioritize for future research studies. The 16 research ideas fell into four high level categories of research interest:

  • Comparative Effectiveness of Interventions
  • Exercise, Physical Activity and Chronic Disease Risk
  • Understanding Aging
  • Other topics including Pain, Neuroplasticity and Quality of Life.

You participated in Research CP. Please tell us what you think of the paper and help us get the word out to other people with CP, their caregivers and to clinician researchers.

Michele and I are planning Research CP 2.0. This will kick off with a review of the existing agenda and a discussion about how to not only move that research forward but also how to develop a more specific agenda for some of the underserved research questions. Stay tuned for details!

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Research CP to be Published

Posted on June 24, 2018
by Paul Gross
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We are excited to announce that Developmental Medicine & Child Neurology has accepted our final draft of our Research CP manuscript. Final publication date is not exact but likely by late August. In addition, the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) sponsored the publication for public access meaning that everyone will be able to read the manuscript in full. This milestone is a tremendous accomplishment for the cerebral Palsy (CP) community. It gives voice and weight to the research questions that are the most pressing for the community. The Research CP process, funded in part by the Patient Centered Outcomes Research Institute (PCORI), engaged a broad swath of members of the extended community with CP including not only people with CP and their caregivers but also the clinicians and therapists who treat them.

We will provide a notice here when the paper is finally published and provide a link to the text. We also hope to kick off a discussion about how to engage the community in the research itself.

Research CP

Welcome to My Cerebral Palsy (MyCP)

Posted on August 8, 2016
by Paul Gross
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MyCP is a patient powered registry for cerebral palsy that is part of the Cerebral Palsy Research Network (CPRN).  Let’s tease that apart.  First, it is a registry or a database of people with cerebral palsy or their caregivers.  Registries are important tools for conducting research.  MyCP is focused on patient-reported outcomes — as opposed to the outcomes that doctors record clinically after an intervention like surgery or medication.  But MyCP will also connect people with CP to researchers if they want to be considered for involvement in studies.  Your information is private and it is only released to researchers if you agree to release it.

Want to learn more?  Stay tuned by signing up for our email alerts.

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Contact Us

Paul Gross, Chairman
Cerebral Palsy Research Network
University of Utah
Williams Building
295 Chipeta Way, Room: 1N455
Salt Lake City, UT 84108

Phone: 402 302-CPRN (2776)
Email: paul@cprn.org

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