Research presents cerebral palsy research updates, funding and funding opportunities, as well as new publications and the information offered within them, to keep the cerebral palsy community informed. Learn how you can be a part of the conversations by joining MyCP, an interactive cerebral palsy community forum, today!

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.

A banner about nutrition in cerebral palsy features a colorful bowl of vegetables and legumes.

Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing

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A balding man with dark rimmed glasses smiles broadly in a white lab coat with a colorful striped tie.

Dr. Richard Stevenson, a developmental pediatrician at UVA, will present on the role of nutrition in health of children with cerebral palsy.

The Cerebral Palsy Research Network is excited to announce its November MyCP webinar entitled “Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing” with Dr. Richard Stevenson, Developmental Pediatrician and Division Head – Neurodevelopmental and Behavioral Pediatrics at the University of Virginia Health. The webinar will take place on Tuesday, November 14, at 8 pm ET. Dr. Stevenson has been leading efforts in the network to investigate the role of nutrition in overall growth and health for children with cerebral palsy (CP).

Growth is considered an integral indicator of nutrition, health, and wellbeing in children. The regular measurement of growth and comparison to reference data is a key component of health maintenance in children across the globe. In general, if a child is growing well compared to their peers, then they are considered to be disease free, adequately nourished, and living in a safe and “good enough” environment. Children with cerebral palsy are smaller in stature compared to their peers and in proportion to the severity of their motor impairment. But this raises many questions:

  • Is this growth pattern a problem that is modifiable?
  • Is the difference in growth due to poor nutrition, due to medical co-morbidities, due to poor activity levels or other factors that can be manipulated?
  • Does this difference in growth for children with CP matter?
  • Is it associated with poor health or with differences in quality of life?

A part of the overall differences in growth in people with cerebral palsy is the manner of growth and maturation of bone and muscle, and that bone and muscle problems (e.g. spasticity, contracture and osteoporosis) contribute to chronic pain and decreased mobility over the lifespan. Could these long-term problems be mitigated through childhood management of diet and physical activity?

Dr. Stevenson will review current knowledge on growth and nutrition and the relationships among growth, health, physical activity, and wellbeing in children with cerebral palsy. He will also discuss knowledge gaps and opportunities for additional research and improvements in how we care for children with cerebral palsy with the goal of improving health and quality of life across the lifespan. Dr. Stevenson also looks forward to community input on these questions and more. To join the webinar, please register using the form below or at https://cprn.org/mycp-webinar-series/. A recording of the webinar will be posted to our YouTube channel within 24 hours of the presentation.

Growing Up Well with Cerebral Palsy
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Cerebral Visual Impairment Workshop

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Dr. Trost, Registries Director, has been invited to participate in the NEI workshop on CVI.

Kristie Bjornson, PT, PhD. A smiling woman with blond hair, wearing a black vest over maroon turtleneck in a hospital hallway.

Dr. Bjornson, Scientific Director, has been invited to participate in the NEI workshop on CVI.

We wanted to share information on an upcoming workshop about Cerebral Vision Impairment (CVI). CVI impacts many people in the cerebral palsy (CP) community, and nearly 10 years ago, Michele, Shusterman, Co-Founder of the CP Research Network, blogged about it as she was fighting to sort out how to help her daughter Lilly (aka Maya) to see. The National Institutes of Health (NIH) wants to build upon the expertise and discussions that have taken place in recent years. Two of our directors have been invited to this new workshop and they will be moderating discussions.

The National Institutes of Health (NIH) is hosting a workshop on Cerebral Visual Impairment (CVI), Roadmap to Consensus and Building Awareness.

CVI emerged as a priority area in the 2021 National Eye Institute (NEI) Strategic Plan, following concerted stakeholder input from CVI patients, families, providers, teachers, and researchers. The plan outlined strategies to develop methodologies to diagnose and classify CVI in order to ultimately understand the neural basis and structural/functional relationships. It also called for forging partnerships with CVI community stakeholders and improving clinician awareness to increase timely recognition of CVI when rehabilitation is most effective. Toward these goals, NEI Director Dr. Michael F. Chiang announced in June 2022 that NEI would create a CVI patient registry. This workshop is designed to discuss technical and practical aspects of creating that registry and identifying the next scientific steps to advance the field.

In developing this workshop, NEI is excited to partner with the National Institute of Neurological Diseases and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development to incorporate expertise from the following disciplines: pediatrics, rehabilitation, behavioral science, and neuroimaging. Of particular interest to NIH leadership is learning from the CP Research Network about the development of their registry and how these lessons could be applied to a CVI registry.

Would you like to register for this workshop?

The workshop will be November 17, 9:30 am – 5 pm ET, in Bethesda, Maryland. In-person seating is very limited. Registration will open to the public on October 23, 2023. The meeting will be videocast in real time, and also recorded for later viewing. For more information, and to register for the live videocast or to attend in-person, please visit the event page https://www.nei.nih.gov/events/cvi-workshop.

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New CP Research Network Publication on Selective Dorsal Rhizotomy (SDR)

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A neurosurgeon with a full beard, glasses, brown hair and eyes grins in a white lab coast for El Paso Children's Hospital

Dr. Ziyad Makoshi, first author of this publication, completed his neurosurgical fellowship while working with CP Research Network Dr. Jeffrey Leonard at Nationwide Children’s Hospital.

The Cerebral Palsy (CP) Research Network congratulates investigator Ziyad Makoshi, MD and his co-authors[*], for the publication of his CP Research Network manuscript entitled “A Mixed-Methods Study of Practice Variation in Selective Dorsal Rhizotomy: A Study by the Cerebral Palsy Research Network.” The publication, released online in the journal Pediatric Neurology in September 2023, investigates provider perception about SDR candidates against the characteristics of those undergoing SDR in the CP Research Network clinical registry.

Selective dorsal rhizotomy (SDR) is an established procedure for the treatment of spasticity associated with cerebral palsy (CP). There is variation in the patient characteristics, e.g., age, motor function, and co-morbidities, deemed most suitable for the surgery. With the indications (valid reasons for using the procedure) expanding, and sometimes conflicting research results, the study team aimed to investigate provider perceptions about SDR candidates through structured interviews compared with the quantitative results of characteristics of those individuals undergoing SDR in the CP Research Network registry.

The results of the study indicate that most CP Research Network registry participants who receive SDR are 8-12 years and typically function at Gross Motor Functional Classification Level (GMFCS) level II or III while a third of individuals receiving SDR are non-ambulatory (not able to walk, i.e., GMFCS Levels IV and V). When surveyed, providers across the range of clinical disciplines that refer children SDR, varied on what the youngest age for SDR should be but agreed on the most likely GMFCS level for SDR and dystonia screening methods. There was not good agreement providers on whether individuals with CP and dystonia should receive an SDR.

The decision to pursue SDR surgery should be made as a team that includes the caregiver and the individual with CP (whenever possible). With differences in the approach to determining the best candidates for SDR and the differences in technique, age and patient characteristics, discussions with families should acknowledge these variations and allow families to reach a decision based on individual concerns, caregiver and/or patient goals, and expectations of outcomes.

Both the registry and the qualitative study of SDR were inspired by our co-founder’s experience with recommendations for his son with CP. Either an extensive orthopedic intervention or an SDR were recommended for improvement of his gait in 2012. Comparative evidence was lacking and most studies of SDR had been done with strict inclusion criteria about patient characteristics. The registry and the qualitative studies were developed by CP Research Network CEO Gross as building blocks to a much larger observational study of SDR for which the network is currently seeking funding. This mixed method analysis provided important preliminary data for that grant application to the National Institute of Neurological Disorders and Stroke earlier this year. The study team expects to get a funding decision for that study in Q1 2024.

The full journal article is available for free download for the next 45 days in Pediatric Neurology. After December 16, 2023, only subscribers to Pediatric Neurology will have access.


*Jeffrey Raskin, MD, Robert Bollo, MD, Brandon Rocque, MD, Susan Zickmund, PhD, Patrick Galyean, BS, Grace Perry, BA, Samuel Browd, MD, Paul Gross, BA, Kristie Bjornson, PT, PhD and Jeffrey Leonard, MD

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Priorities in Adult Cerebral Palsy Research

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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.

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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.

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Dr. Joyce Trost Hired As Director of CP Registries

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A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.The Cerebral Palsy Research Network hired Joyce Trost, PT, PhD into the role of Registries Director. Dr. Trost has 32 years of clinical, research and administration experience with an expertise in gait and motion analysis serving as the Director of Research for 15 years at Gillette Children’s. She will be responsible for managing the growth, quality and research output of the CP Research Network’s two cerebral palsy registries. Our clinical registry captures data about patients seen at CP Research Network clinical sites and our community registry captures data about the lived experience with CP outside of a hospital setting. Dr. Trost started with the network on August 21, 2023.

“We are honored to have attracted such a talented and experienced CP researcher to our team,” said Paul Gross, President and CEO of the CP Research Network. “Dr. Trost brings a depth of additional skills to the role that we envisioned for our registries that will further strengthen our network.”

Dr. Trost began her career as a physical therapist and eventually went on to get a PhD in Rehabilitation Science. As the Director of Research at Gillette, she established, directed, and drove the strategy for Pain, Spine, Orthopedics, Rehabilitation, Neuroscience, Motion Analysis, and Health Services Research programs led by MD/PhD dyads. She developed a portfolio of funding that included industry, grant and philanthropy, cultivated relationships with many different collaborators, and prioritized scientific rigor and systematic data collection processes.
In conjunction with team members, helped design Gillette’s Center for Gait and Motion Analysis database, built Sponsored Project Administration, and revolutionized the organization’s research governance, compliance, and study start-up process while shaping the organization into a research leader in cerebral palsy and pediatric rare diseases.

A passion of hers is involving those with lived experience in the research process. Her interest in physical therapy and exercise’s impact on muscle was sparked as a pre-teen when she had a life altering figure skating accident. Her ongoing research interests are in early intervention and outcomes of exercise and interventions on muscle and function for those with cerebral palsy. In her personal life, she is married, the mom to 4 young adults, and spends free time working on their farm, fishing or out on bike trails with her family.

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!

Make a Difference: Join Our STEPtember Fundraising Team

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A blue tile with exercise icons in the background and text to emphasize there are more than 80 ways to move.We invite you to join us to make a difference in cerebral palsy (CP) by helping to raise funds for CP research through STEPtember. STEPtember is an activity-based peer-to-peer fundraiser that happens throughout the month of September. Donations support us through our strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) as they are the leading private funder of CP research in the United States. Participating in STEPtember has multiple benefits:

  • You will advance research for CP,
  • You will raise awareness about CP,
  • You will stay active and be able track your progress.*

We have created a CP Research Network team for STEPtember. You may join our team as an individual or form your own team under the CP Research Network team (you will see these options on our join page). STEPtember comes with an iPhone app to help you monitor and share your activity on social media or with other team members. And while the name includes “step”, you get step credit for any activity including biking, rolling, swimming and lots of other forms of activity and exercise. It’s a great way to enhance your fitness and have challenging fun with friends, family and co-workers.

Registration is now open. Build your team in August and get ready to get more active and start fundraising in September. Get recognized with shirts and jackets for your fundraising achievements! Please join us and help make a difference in CP research!

* We really want to emphasize that even though the name is “STEPtember”, we support more than 80 ways to stay active and transform it into step equivalents to make the opportunity available to people of all abilities.

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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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