The Cerebral Palsy Research Network has been established to conduct several types of clinical research and quality improvement projects to improve healthcare for people with cerebral palsy.

A blog banner features speakers Lisa Letzkus and Zach Vesoulis in white lab coats smiling.

Early Detection of CP Webinar

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Dr. Vesoulis in a white lab coast, short wavy hair and a red tie smiles for his professional headshot.

Dr. Vesoulis will be co-leading the webinar on Early Detection of Cerebral Palsy.

Dr. Letzkus with blond hair and dark blouse covered by a white lab coat smiles for her professional headshot.

Dr. Letzkus, a nurse scientist and nurse practitioner, will co-lead the webinar on Early Detection of Cerebral Palsy.

The Cerebral Palsy Research Network plans to add early detection of cerebral palsy (CP) to its national registry to accelerate the pace of research in early intervention (EI) for children with CP. Early intervention holds the promise to improve outcomes for children with CP. CP Research Network Co-Principal Investigators Lisa Letzkus, PhD, RN, CPNP-AC and Zachary Vesoulis, MD, MSCI will present the study design to the community in a webinar next Thursday, September 21, at 8 pm ET. This free MyCP webinar is open for anyone who registers from the CP community or the clinical care community and will be recorded.

Dr. Letzkus is a nurse practitioner and nurse scientist that leads the early detection program at UVA Health in Charlottesville VA and Dr. Vesoulis is neonatologist and NIH funded researcher at Washington University in St. Louis. The two will present our planned research project, its goals and how it may impact outcomes in CP. They will both be available for questions and answers following the presentation.

The CP Research Network clinical registry has recently exceeded 8,000 patients from sites across its network and continues to grow. Patients are enrolled in the registry when they have a clinic visit or an intervention related to CP. Because the network was founded before the early detection guidelines had been created, most of those patients are enrolled at age two or later. The opportunity to begin enrolling patients as early as 12 weeks at our sites that follow the early detection guidelines would be a tremendous benefit to researchers who seek to test early interventions to improve outcomes for children with CP. And because our registry is longitudinal, we will be able to follow children as the progress through milestones and see how early diagnosis and intervention impacts the lives of children with CP. Please join us to learn about this exciting research initiative.

The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Chicago Bound — AACPDM Annual Meeting

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Clinicians and researchers who direct their work toward improving care for individuals with cerebral palsy (CP) will gather in Chicago, Illinois next week for the meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The CP Research Network will have a significant presence and will demonstrate its growing impact on the field of CP care through two mini-symposia, one morning session, four free paper presentations and three scientific posters. Network leadership will also be hosting an informational session on the evening of September 11th where clinicians and researchers interested in joining or learning more about how to engage with the CP Research Network.

CP Research Network CEO Paul Gross with facilitate two discussions (mini-symposia) about how the resources from the collaborative network can advance discovery. The first will focus on understanding national and international varied approaches to surgical decision making for selective dorsal rhizotomy (SDR) which may be affecting outcomes. The panel which includes several CP Research Network investigators, Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS will share data collected at several large tertiary care centers and reflect on the variations in SDR practice across the centers.

The second symposia led by Paul Gross and including network investigator Michael Kruer, MD will highlight how leveraging rich data sets like the one being built through the CP Research Network can accelerate discovery as well as bring along a new generation of young investigators. They will discuss our community and clinical registries, the sources of data available to researchers, and the practical realities of comparing and linking the data to generate new knowledge. They will also touch on how these large data sets have opened opportunities for a new generation of young researchers who are now presenting papers and posters at the meeting including Elizabeth Boyer, PhD, Cristina Sarmiento, MD, Brandon Rocque, MD, Sruthi Thomas, MD, PhD, Shannon Strader, DO, MS, and Bhooma Aravamuthan, MD, DPhil. The morning seminar presentation entitled, Accessing the CP Research Network Registries for Community Research and Secondary Analyses will complement the symposia and will feature Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque. At this seminar, researchers will learn how to apply to access data generated by the CP Research Network and the types and quantity of data available in both the clinical and community registries.

Free papers and posters that can only be accomplished through the power of multi-center studies are being presented including: SDR practice variation analysis by Brandon Rocque, MD, MS, Botulinum toxin practice variation in North America by Sruthi Thomas, MD, PhD, and Multi-center improvement in dystonia detection in people with CP by >Bhooma Aravamuthan, MD, DPhil. By by providing an infrastructure for these multi-centered, rich data analyses the CP Research Network will speed up research discovery and impact clinical care in the near future.

Our community registry is fosters unique research that includes the patient’s voice through self reported experience. It has also given several young researchers the opportunity to grow their careers including: Consequences of Falls by Elizabeth Boyer, PhD, Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Impact of Gross Motor Function and Age on Functional Decline by Cristina Sarmiento, MD, Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Chronic Pain Findings, Cristina Sarmiento, MD, and CP Sensory study by Bhooma Aravamuthan, MD, DPhil. The opportunity to gain the lived experience voice with many individuals with CP is a true value to investigators who do not otherwise have the vast connections of the CP Research Network.

The informational session is an open house style opportunity for individuals unfamiliar with the CP Research Network who want to ask questions about how the learning health network can be leveraged for research and improving quality care of people with CP. There will be opportunity to interact with CP Research Network leadership including Paul Gross, Founder and CEO, Michele Shusterman, Founder and Education Director, Kristie Bjornson, PT, PhD, Scientific Director,and Joyce Trost, PT PhD the new Registries Director. Several site investigators will be there as well including Sruthi Thomas, MD, PhD of Texas Children’s Hospital and Brandon Rocque, MD, MS from Children’s Alabama. You can learn more about what makes the CP Research Network unique, the benefits of membership, and about the full-service data coordinating center which includes statistical support for network related projects. You can ask about membership fees and how they support enhanced knowledge sharing, quality of care projects for benchmarking, collaborative research and professional development with your peers.

We look forward to connecting with you in Chicago!

Dr. Julie Stutzbach smiles with shoulder length brown hair, a dark blazer and a bright red blouse.

Webinar: Adults with Cerebral Palsy and Low Back Pain

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A woman with shoulder length brown hair smiles with a brown jack and red shirt.

Dr. Stutzbach will explain the goals of her study of low back pain in adults with cerebral palsy.

The Cerebral Palsy Research Network has initiated a new study to examine the effects of low back pain on quality of life for adults with cerebral palsy (CP). Julie Stutzbach, PT, DPT, PhD, (link) a clinician scientist with extensive experience in neurorehabilitation, clinical trials and qualitative research will present her new study concept to members of the CP community on Wednesday, July 19 at 8 pm ET during our monthly MyCP Webinar Series.

Chronic low back pain is a common problem in adults with CP. It leads to increasing disability and functional decline. Improving pain management strategies is critical to improving quality of life as people with CP age. However, participants’ perspectives on living with low back pain have not been thoroughly examined. This webinar will cover a new study proposal that will use interviews combined with survey data from the adult study in our Community Registry to explore how pain interferes with daily function as well as how adults with CP experience accessing treatment for low back pain.
This study builds on the CP Research Network’s research partnership program that enables investigators outside of the network to conduct studies-based network based on our prior work and research tools. Dr. Stutzbach has partnered with Mary Gannotti, PT, PhD who the principal investigator for the CP Research Network Adult Wellbeing and Pain studies that are available through our Community Registry. Drs Gannotti and Stutzbach will use the Community Registry to enroll participants that have taken our adult pain survey and identified low back pain as an issue in their lives. This new study has been approved by the Regis University Institutional Review Board where Dr. Stutzbach conducts her research.

Community members interested in this MyCP webinar must register. Dr. Stutzbach will be available for Q&A directly following the presentation. A recording of the presentation and discussion will be posted on our website and our YouTube channel within 24 hours.

Low Back Pain in Adults with CP
A small breakout group of clinicians gathers around a table to advance CP research

Inside the CP Research Network Annual meeting

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Clinicians sit classroom style for a keynote lecture in front of a large screen.

The keynote on “Efficiences in Clinical Trial Design” was delivered by Dr. Stephen Wisniewski.

Earlier this month, the Cerebral Palsy Research Network held its annual investigators’ meeting in Wilmington, Delaware. It was graciously hosted by AI duPont/Nemours Children’s Hospital. This annual face-to-face meeting is critical to advancing our Research CP agenda, connecting investigators with community members and funders, and re-energizing our research community to answer the questions that our community values most. This month’s MyCP webinar will be on Tuesday, May 30, at 8 pm ET and share an inside view of our annual meeting from the perspective of community participants.

Community members Jocelyn Cohen, Gina Rolle, and Nina Miller all attended the annual meeting and will participate in the webinar to share their perspectives on the meeting and the work of the network. At the wrap up, Ms. Cohen expressed her feelings about the meeting to us. “I want all the clinicians here to know that I’m grateful for the work you’re doing, for your openness toward collaboration, and for your willingness to have these conversations, said Ms. Cohen. “I’m excited to connect with you professionally and personally.” Ms. Cohen attended the meeting in a dual role as she is both an adult with CP and the Vice President of Communications and Engagement with our strategic partner Cerebral Palsy Alliance Research Foundation.

Paul Gross, President, CEO and Co-founder of the CP Research Network will give an overview of the meeting and how the agenda relates to the network’s strategic plan. Mr. Gross will be followed by Kristie Bjornson, PT, PhD, the Scientific Director, who will give an overview of the registry and the research discussed at the meeting. Our panel of participants will then share their experiences and learning from the meeting.

The annual meeting had 50 attendees in total including researchers from every discipline that treats people with CP including developmental pediatrics, gastroenterology, internal medicine, neurology, neurosurgery, occupational therapy, pediatrics, physical medicine and rehabilitation, and physical therapy. Research funders in attendance included a representative from the National Institutes of Health, the CP Foundation, Cerebral Palsy Alliance Research Foundation and United Cerebral Palsy. Attendees participated in general sessions about our registries and efficiencies in clinical trial design as well as numerous small group working sessions on topics including adult care, complex CP, dystonia treatments, genetics, grip strength, imaging, nutrition and growth, selective dorsal rhizotomy, and surgical decision making. The social highlight of the meeting was dinner hosted by Dr. Wade Shrader and his wife Carol at their lovely home in Wilmington.

Next Wednesday’s webinar will be unique in our series as it brings our research efforts to the community through the eyes of fellow community members. Please join us by registering in advance. Webinar Series subscribers will receive a link to the webinar in email prior to the event. As usual, the webinar will be recorded and posted to our YouTube channel within 24 hours of its airing.

Blurred lights and pathway going around a curve to convey the speed of acceleration.

Accelerator Award: Partnership Strengthens CP Research

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The CP Research Network and CPARF logos side by side to indicate our new strategic partnership.The Cerebral Palsy Research Network announces a new research award opportunity called “Accelerator Awards” made possible through the network’s partnership with the Cerebral Palsy Alliance Research Foundation (CPARF). Accelerator awards are up to $25,000 and are meant to rapidly advance research in the network. These awards will be made to investigators in the CP Research Network who put forth new study proposals and registry analyses that enhance the generation of new knowledge for the care and treatment of people with CP. The award process will be managed by Dr. Kristie Bjornson, the network’s Scientific Director who has a long track record in research funded by the National Institutes of Health (NIH).

“We reviewed all the funding mechanisms available to CP focused investigators and established a process that will really streamline the timeline for decision making and investigator feedback,” said Dr. Bjornson. “This award mechanism is a significant milestone for the CP Research Network because it provides the necessary funding to leverage our CP Registries for large public grant applications to answer key questions developed by the community of persons with CP. It is intended to secure time and resources that might not otherwise be available.”

The Accelerator Awards extend additional benefits to sites and investigators that join the CP Research Network. The network offers professional development opportunities, collaborative research partnerships, participation in quality improvement initiatives, implementation of care pathways and powerful research infrastructure hosted at its Data Coordinating Center at the University of Pittsburgh. Nonmembers can learn how to join the network or partner with existing members from our webinar on this topic.

The CP Research Network began taking applications from its site investigators as of May 1, 2023. Grant applications may be submitted on a rolling basis and may be approved in as little four weeks. This rollout aligns well with our annual investigators’ meeting at Nemours/AI duPont earlier this month, where 50 people, including network site investigators, community members, an NIH program officer, and members of leading advocacy groups, gathered to advance study concepts being developed within the network.

The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Our Impact Grows: Sharing Our Findings

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The program cover the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine features skyline view of Chicago.

CP Research Network investigators will share our latest findings from our research and quality improvement at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine in Chicago this fall.

Providers, families and researchers for children with cerebral palsy (CP) will meet in Chicago, Illinois on September 10-13th for the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) annual meeting. This in-person meeting will bring together participants from around the world. The CP Research Network will demonstrate is growing impact on the field of CP care and research by sharing its findings in two mini-symposia, one morning session, four free paper presentations and three scientific posters. All these efforts are aimed at improving outcomes for people with CP through the implementation of evidence-based information and practices. We are thrilled to have the opportunity to share the results of our research, and to provide information about how the CP Research Network can be a catalyst for CP research.

The mini symposia will be two hours in total length including discussion.
Topics include:

  • Common Data Models and Research Data Sources: The practical realities of leveraging rich data sets to accelerate discovery – A multi-disciplinary team of presenters will be led by the CP Research Network CEO Paul Gross and include Michael Kruer, MD. They will discuss the sources of data available to researchers, the mechanism to access them and the practical realities of comparing and linking the data to generate new knowledge. The symposium will include speakers with real-world experience leveraging and linking these types of disparate but related data sources. It is appropriate for researchers focused on clinical and translational research.
  • Understanding the rationale behind practice variation in selective dorsal rhizotomy (SDR) moderated by Paul Gross, includes presenters from the disciplines that participate in SDR decision making including several CP Research Network investigators including Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS. The panel will discuss varied approaches to surgical decision making for SDR including overviews of national and international practice variation. They will discuss criteria involved in surgical spasticity decision making for SDR across several large tertiary care centers.

The morning seminar presentation is:

  • Accessing the CP Research Network Registries  for Community Research and Secondary Analyses featuring speakers Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque, MD, MS.  These speakers will discuss how researchers can access the data generated by the CP Research Network registries to perform secondary analyses that generate new knowledge about CP from existing data collection.  The speakers will cover the process for applying to access data and the types and quantity of data available in both the clinical and community registries.

Free papers and scientific posters feature a single investigator presenting findings based on research generated from our network. Free papers are eight minute oral presentations given to attendees and posters are displayed a specific times during the conference in which investigators are available to explain their research findings one on one with interested attendees.  In this format, topics and investigators include:

Free papers:

Scientific Posters:

These symposia, morning seminars, scientific posters and free papers all focus on improving care and advance research on the international stage. The broad reach the network’s work is clearly visible at this annual meeting and will attract new clinician researchers into our circle, with potential to widen our eventually impact.

Dr. Jeffrey Leonard, chief of pediatric neurosurgery, with a white lab coat, blue shirt and tie.

Selective Dorsal Rhizotomy in the Real World

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Dr. Leonard is a pediatric neurosurgeon who leads the network study of selective dorsal rhizotomy (SDR).

The Cerebral Palsy Research Network’s MyCP webinar for April will feature Jeffrey Leonard, MD, Chief of Neurosurgery at Nationwide Children’s Hospital, talking about selective dorsal rhizotomy (SDR) – a surgical procedure to reduce spasticity for people with cerebral palsy (CP). Dr. Leonard, neurosurgery lead for the CP Research Network, will discuss the “who, what, how, when and why” of SDR including the current gaps in knowledge about the procedure and the network’s planned study to address these gaps. At the conclusion of the presentation which begins on Wednesday, April 19 at 8 pm ET, Dr. Leonard will be available for an open Q&A with members of the CP community.

“The question of who is the best candidate for SDR was the founding question of the network,” said CP Research Network President, CEO and Co-founder Paul Gross. “Being presented with this surgery as an option to help my son’s gait inspired me to seek real world comparative effectiveness evidence about SDR versus other interventions that were offered us at the same time. Dr. Leonard’s experience and passion for designing a study to address these gaps in knowledge aligns with our established patient-center research agenda (Research CP).”

Later this year, Dr. Leonard and other leading researchers in the CP Research Network are planning to submit a grant application to the National Institutes of Health for a 20-center study to generate answers to this question. He will describe the procedure and the extent of variation in practice across the United States as well as how the study will be designed to generate evidence about the effectiveness of SDR.

Please join us for the webinar and discussion next Wednesday evening. You can register for this webinar or the whole MyCP webinar series to receive notices every monthly webinar on our research. The webinar will also be recorded and posted to our YouTube channel.

Webinar: Making a Difference with MyCP

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A headshot of a smiling man with grey eyes and short dark hair. Paul Gross is the President & CEO of the CP Research Network.

CP Research Network CEO Paul Gross will explain how both community members and clinician researchers can get the most out of MyCP.

This month’s webinar turns the table on our usual “clinician scientist’s report on their study results” and focuses instead on how you can contribute to science as a member of the community or as a clinician.  Cerebral Palsy Research Network Chief Executive Officer, Paul Gross, will demonstrate the range of capabilities of and benefits from engaging in research through MyCP.  MyCP is a personalized, secure web platform for collaboration and contribution to research about the lived experience of having CP or caring for someone with CP.  The webinar is scheduled for Wednesday, March 29, at 8 pm ET via Zoom.

The primary way that MyCP allows community members to participate in research is through surveys hosted in a well-established academic research survey platform called REDCap.  Before community members can access surveys, we go through an informed consent process.  We will discuss the key areas of consent and the privacy and security of data to enable your participation in research.  Members of the research community will benefit from learning about how consumers participate in our research environment and how community members are informed of available studies.

MyCP includes personalized web resources, access to our award winning toolkit and other resources, and a private discussion forum.  The discussion forum provides a private and optionally anonymous platform for community members to interact with the physicians in our network to discuss research priorities, evidence-based treatments and to share important lived experiences.  The webinar will review how community members and clinicians can connect to improve outcomes for people with CP.

Please register and join us for this presentation and discussion so you can learn how MyCP can help you contribute to the conversation and the action to optimize the lifelong health and wellbeing of people with CP.  The webinar will also be recorded and posted to our website and YouTube.

CP Research Network Advances

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In honor of Cerebral Palsy Awareness Month, we are sharing some recent network research advances. The Cerebral Palsy Research Network has had numerous publications and academic presentations over the last year that we want to highlight for our community. Some publications and presentations are an important but an intermediate step to our mission to improve outcomes for people with CP. But others, like the first two here, represent actual changes in evidence or surgical practice that can improve the quality of someone’s life with CP today. Some institutions and practitioners may learn from our findings. But ultimately it is our ability to take our findings and implement that evidence into the care of people with CP at all of our centers that begins to fulfill our mission.

Recent Publications

  • The cover of the February Journal of Neurosurgery: Pediatric with a spine x-ray.

    A multicenter initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project” by Robert Bollo, MD, a pediatric neurosurgeon at Primary Children’s Hospital in Salt Lake City, Utah. This publication details the use of quality improvement methodologies to reduce one of the most serious complications of an intrathecal baclofen pump. We are expanding this effort in our network beyond the original four centers included in the publication to four additional centers. Dr. Bollo also delivered our MyCP webinar on ITB pumps last year.

    • The red cover of Developmental Medicine and Children Neurology journal
  • In July 2022, Developmental Medicine and Child Neurology published “Epilepsy and proxy-reported health-related quality of life in children and young people with non-ambulatory cerebral palsy” authored by our Epilepsy Study Group principal investigator Adam Ostendorf, MD, a pediatric epileptologist at Nationwide Children’s Hospital. Dr. Ostendorf also presented his findings from his network study at this epilepsy MyCP webinar last year.
    • The cover the Neurology - the Journal of the American Academy of Neurology -- feature a brain image with red, green and yellow highlights.
  • A month prior, June 2022, Neurology, the Journal of the American Association of Neurologists, published our “Top 10 Research Themes for Dystonia in Cerebral Palsy: A Community-Driven Research Agenda” by lead author Laura Gilbert, DO, MBA. This publication is being used by the CP Research Network and others to prioritize research and care for people with dystonia in CP. Dr. Gilbert presented the results in a MyCP Webinar and Dr. Bhooma Aravamuthan is leading both a dystonia diagnosis initiative and a dystonia in CP research group in the network both of which will directly improve outcomes for people with dystonia in CP.
    • The purple cover of the Journal of Pediatric Rehabilitation Medicine with colorful pink, orange, green, and grey circles.

  • In March 2022, the Journal of Pediatric Rehabilitation Medicine published “Hip surveillance for patients with cerebral palsy in the United States” by M. Wade Shrader, MD based on a review of practices across the CP Research Network. Dr. Shrader talked about hip surveillance in our most watched MyCP webinar on the topic.

The CP Research Network Curriculum Vitae

A thumbnail of the CP Research Network CV with its logo, name and leadership team listed.

We have assembled an all-in-one document to summarize the breadth and depth of the network’s progress which is available for download on our website. This PDF delineates network leadership, participating sites and investigators, advisors, committee members, board members, funded studies, publications and presentations all in one document. We keep it up to date with our new sites and investigators and recognition of our ever growing body of work. Community members can bring it to their CP physicians to ask if they plan to be involved! Clinicians and researchers can use it as evidence for why their institution should be involved in the network activities.

Our Community Registry Goes Back Online

MyCerebralPalsy LogoWhile we are excited about these publications and accomplishments, our work is just beginning. After a several month hiatus while we transitioned between data centers, we are happy to announce that our Community Registry is back online and accessible at mycp.org. The Community Registry captures lived experience from community members in the form of surveys. In particular, it hosts our adult study of wellbeing and chronic pain that will help us target future studies to improve outcomes for adults with CP. Parents of children (minors) can also contribute to the Community Registry with other studies available there. To learn more about the Community Registry, you can visit our Community Registry information page.

Dr. Aravamuthan with long black hair over a white lab coat & Dr. Barber with shoulder length brown hair in a black suit jacket

CP Sensory Study Findings Webinar

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Registration
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We will send the webinar pre-registration instructions to this address.
Register for the whole series (we will email you the details)?
Registration
Please provide your first and last name.
We will send the webinar pre-registration instructions to this address.
Register for the whole series (we will email you the details)?
The Cerebral Palsy Research Network will continue it MyCP Webinar Series next Tuesday, February 21, at 8 pm ET with a presentation of the findings of its Sensory Study that was conducted with our Community Registry last summer. Principal investigators, Bhooma Aravamuthan, MD, DPhil and Danielle Barber, MD, PhD, will co-present the results of their study. The study included input from adults with CP caregivers for children with CP.

Dr. Aravamuthan described the goals of the study in a short YouTube video. She explained that most treatments for CP focus gross motor concerns but sensory issues may play a significant role. Their findings suggest that abnormally decreased sensitivity to sensory input – especially the sense of touch — decreases with age especially in people with more limited mobility. Join us to learn how these findings relate to pain and how these findings may be foundational for the treatment of pain.

Dr. Aravamuthan is pediatric movement disorders neurologist at Washington University in St. Louis and a leader in dystonia research in the CP Research Network. Her Co-PI in this study, Dr. Barber, is an attending physician in the Division of Neurology at Children’s Hospital of Philadelphia. Both clinician researchers will be available for questions and answers after the presentation of their findings.

The MyCP Webinar Series is a monthly presentation of research findings for studies conducted by the CP Research Network. The series is free and open to all members of the CP community. The webinars use the Zoom meeting platform to allow participants to interact in real time with the researchers at the conclusion of the presentations. You can sign up for this webinar here. You can choose to signup for the whole series and received automated email invitations to each month’s webinar. You can sign up for our YouTube channel to get notifications when recordings are posted.