The Cerebral Palsy Registry is the core data project of the Cerebral Palsy Research Network. The cerebral palsy registry is a database of patients that are enrolled from all the CP Research Network participating centers.

Artificial Intelligence and Cerebral Palsy Research

 

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

Dr. Vesoulis will be leading the webinar on the use of Artificial Intelligence in Cerebral Palsy research.

Next Monday, March 4, at 8 pm ET our MyCP webinar features Zachary Vesoulis, MD, MSCI who will describe the Cerebral Palsy Research Network’s initial exploration into using artificial intelligence (AI) to make new discoveries in cerebral palsy (CP). Dr. Vesoulis will discuss how we are planning to apply the AI concept of “deep learning,” a model that processes information similar to the human brain. This method would be applied to both our CP registry and brain images to predict outcomes in CP. Dr. Vesoulis, a neonatologist at Washington University in St. Louis and a researcher funded by the National Institutes of Health (NIH), has developed a plan to use the network’s large cache of brain magnetic resonance images (MRI) to discover previously unseen relationships between MRIs of the brain and clinical findings in our registry. These relationships may allow us to better understand and perhaps predict different aspects of CP like issues with muscle tone or the type of movement disorder that may affect the individual, or common co-morbidities like epilepsy, learning difficulties, or vision impairment.

Dr. Vesoulis joined forces with network Chief Executive Paul Gross to develop the study. While Dr. Vesoulis has expertise in neuroimaging, this study involves significant expertise in and infrastructure for implementing the deep learning model of AI. Gross’s roots at Microsoft have led to interest from Microsoft’s AI for Health team. And the University of Pittsburgh, where our data center is hosted, has significant AI experience to address the needs of the project. Other academic centers have expressed interest in collaborating in this next generation type of research as well.

Interested members of the community can join the meeting by registering below. After the presentation, Dr. Vesoulis will be available to answer questions. The webinar will be recorded and available on our YouTube channel following the presentation.

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)?
A blog header with a picture of an adult brain MRI for a person with cerebral palsy

Webinar: Imaging as a cerebral palsy biomarker

Dr. Gelineanu-Morel smiles broadly with auburn hair and Dr. Shaikhouni smiles in a suit and tie.

Doctors Gelineau-Morel and Shaikhouni are pursuing an imaging database extension to the CP Research Network registry to enable the discovery of biomarkers.

The Cerebral Palsy Research Network registry has more than 8,000 patients and an associated 5,000 brain magnetic resonance images (MRI) with those patients stored at the hospitals in the network. Network investigators are working to develop an imaging database extension to the CP Research Network clinical registry so those brain MRIs can be used as biomarkers – biological findings to identify or predict a disease or condition – to initially help diagnose dystonia in CP and eventually other injuries to the brain. In our first MyCP webinar of 2024 next Wednesday, January 31 at 8 pm ET, Rose Gelineau-Morel, MD, a pediatric movement disorders neurologist from Children’s Mercy Hospital, and Ammar Shaikhouni, MD, PhD, a neurosurgeon from Nationwide Children’s Hospital, will present the concept of an imaging database and how the network envisions using it to enhance diagnosis and potentially guide treatment decisions through expanded knowledge gained by analyzing a large data bank of brain MRIs.

Drs. Gelineau-Morel and Shaikhouni along with other colleagues from the CP Research Network have been planning a study that would first build the image database infrastructure to enable the movement of those brain MRIs to our Data Coordinating Center (DCC) at the University of Pittsburgh. Having aggregated numerous brain MRIs into a singular database, the lesions in the brain scans can be mapped to known connected brain areas to predict functional outcomes in a person based on their brain lesions. Having a large database of brain images associated with the clinical findings in our registry opens many avenues of discovery about brain injury and functional outcomes.

Brain MRIs are large and must be stripped of personal identifiers before being centralized at our DCC. Building the database is expensive and will require grant funding which the team led by Dr. Gelineau-Morel is actively pursuing. Both doctors will discuss how the imaging database can not only address issues of identifying dystonia in CP but also how it will be a key tool in our network toolbox for identifying more biomarkers and solving numerous problems.

Please join us for this free MyCP webinar by registering in advance. The presentation will be followed by an open question and answer period. It will also be recorded for future viewing on our YouTube channel or click on the link below.

Imaging as a Biomarker
Night sky with colorful fireworks

Happy New Year! 2023 in Review

As we turn the page on 2023, we look back with much appreciation for all that our extended community is doing to accomplish our mission of improving the health and wellbeing of people with cerebral palsy (CP) and their families. Many of you have engaged in the work of improvement in care and new knowledge generation through creation of or participation in studies. We thank you all for your efforts, your willingness to share ideas and resources with your colleagues and researchers, and your unrelenting drive to make life better for people with CP.

We kicked off the year with an impactful strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) which is the largest private funder of CP research funding in the United States and a disability technology accelerator. The CP Research Network has fundraised together with CPARF as part of their STEPtember campaign and CPARF has supported all of our existing research efforts as well directly funded three new studies – two for adults and one for children.

Our research program benefited from the guidance of our data coordinating center at the University of Pittsburgh. A big shout out goes to Dr. Stephen Wisniewski and his whole team at Pitt for their innovative perspective on study designs, advancing our data collection and reporting, and increasing the scalability of network to enable more clinicians and community members to participate in making new discoveries in cerebral palsy. We also benefited from the addition of Dr. Joyce Trost to our research team. Dr. Trost leads our registries which have grown substantially in 2023 and underpin all our work. Alongside her, our scientific director Dr. Kristie Bjornson and Quality Improvement director Dr. Amy Bailes, strengthen our research pipeline and care improvement efforts with their related expertise. Together this team has overseen the development and advancement of 31 studies and improvement efforts including 20 newly initiated THIS year!

What does all this research activity mean to you? First that the CP Research Network is serious about changing outcomes through care for people with CP of all ages. For adults, the network is very focused on pain and its impact on function. Participating centers increased the assessment of pain in adult visits from 24% to over 90% this year and have been funded by CPARF to standardize the classification of that assessed pain so that it can be treated effectively. For children, the network is improving the dystonia diagnosis and working toward network surveillance of hip dislocation which can be a painful result especially for children with CP that are less mobile. Our improvements in care are being built into the electronic medical record system to make the clinical assessment of pain, diagnosis of dystonia and surveillance of hips, part of the standard of care for patients at CP Research Network hospitals. Three new publications this year highlighted just some of the research and improvement in the network including the effort to reduce infections after baclofen pump surgeries, chronic pain in adults, and a study of practice variation in selective dorsal rhizotomy.

Our education and engagement programs have seen large increases in enrollment in MyCP – our interactive web portal for personalized information and participation in research. Our monthly MyCP webinar series has engaged hundreds of community members in live discussions and gathered more than 7,000 views on YouTube this year. Our CP Toolkit continues to be our most often downloaded educational piece helping families understand the meaning of a CP diagnosis.

Finally, our partnership with the National Center for Health, Physical Activity and Disability provided incredible health and wellness opportunities to adults with CP. While only 16 people took advantage of the fantastic MENTOR program that teaches participants about mindfulness and how to get sufficient adaptive exercise and nutrition for improving one’s health, these MENTOR participants raved about the classes and the result, so we hope to triple the number of participants in 2024!

The timeliness of MENTOR has been invaluable to me, given my life stage, CP journey, and the additional impact of my other health conditions. The program has equipped me with the necessary skills to manage these challenges, such as mindset, activity levels, and nutrition. Additionally, the one-on-one opportunities to meet with staff have helped me fine-tune my approach.
Marji – MENTOR program graduate

We have exciting plans for 2024 including much deeper involvement of the community in our research program starting with opportunities to attend our annual investigator meeting in April and participation as co-investigators on developing projects. We anticipate a lot of progress, improvement, funding and results from our myriad research projects under development. And at least two new toolkits will be launched this year!

Dr. Sarmiento smiles broadly with her brown hair pulled back, in a navy blazer and light colored swoop neck blouse.

New CP Research Network Publication on Adults with Cerebral Palsy and Chronic Pain Experience

Dr. Sarmiento smiles broadly with her brown hair pulled back, in a navy blazer and light colored swoop neck blouse.

Dr. Cristina Sarmiento is a rising young investigator in the CP Research Network with her first network publication and an Accelerator Award granted in October. She focuses on issues of transition and adults with cerebral palsy.

The Cerebral Palsy (CP) Research Network congratulates Cristina A. Sarmiento, MD and her co-authors[*], for the publication of her CP Research Network manuscript, “Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry”. The Disability and Health Journal released this peer reviewed article in November 2023, our first publication based of our adult study launched in MyCP in 2019. The publication describes the pain experience and its impact on function and quality of life among adults with CP who have chronic pain. It marks a tremendous milestone in furthering our understanding and sharing of adult pain research.

Approximately 70% of adults with CP report some type of pain with increasing rates of chronic pain with aging. Prior work has shown that pain has significant implications for activity and quality of life for adults with CP although the long-term effect of pain is not known. Not surprisingly, understanding chronic pain and the treatment of pain in adults with CP has been identified by individuals with CP, caregivers and providers and the National Institute of Health as a top CP research priority. The Cerebral Palsy Research Network is providing a rich opportunity to collect systematic, longitudinal data on people with CP such as the data used in this study.
The authors of this study sought to describe the pain intensity, interference, locations, changes, and helpful treatments experienced by participants as well as how quality of life and function are affected by pain. Information was collected from 2019 through 2022 through including functional changes and information about chronic pain through surveys circulated by the CP Research Network in our Community Registry which is hosted in MyCP — our personalized web portal on CPRN.org. The authors are inspired to continue to pursue learning about pain experience in adults with CP because they know that chronic pain is a significant, common condition for many adults with CP, affecting so many aspects of life – mobility and daily function, tone, sleep, mental health, quality of life, social participation, and more. However, they don’t yet have good ways to accurately identify, classify, and treat pain in adults with CP. The Community Registry allows adults with CP to tell us about their pain experiences so clinicians and researchers can better understand chronic pain in CP, with the goal of ultimately improving its management. We discussed some of these findings in a MyCP webinar.

Among participants in the Community Registry where community members report their experiences with CP, 78 % reported having chronic pain. The average age of pain onset was 28 years with low back and legs the most frequently reported areas of pain. Pain interfered most with work, walking and sleep. GMFCS level and age did not affect severity of pain reported. Individuals most frequently tried physical therapy, massage and exercise and stated that these non-pharmaceutical treatments helped to decrease the pain although for the vast majority of participants, their pain was worse than or the same as it was a year prior. Adults with CP with moderate-to-severe pain reported that their pain interfered with function and activities and had greater depression and lower satisfaction with social roles compared to those with mild pain.

Unfortunately, chronic pain in adults with CP often goes unrecognized and under-treated. Many adults with CP tend not to seek professional treatment and rather self-manage their pain, highlighting a critical gap in clinical practice. The authors recommend based on this work that all adults with CP, regardless of age or degree of physical disability get screened for pain, as they are at higher risk for chronic pain at younger ages compared to the general population. Screening and classifying pain is the goal of one of our research projects funding by our partner CP Alliance Research Foundation.
The full journal article is available for free download for the next 15 days in The Disability and Health Journal. After January 1, 2024, only subscribers to The Disability and Health Journal will have access. Dr. Cristina A. Sarmiento, MD first author of this publication, practices at the University of Colorado Anschutz, Department of Physical Medicine and Rehabilitation specializing in inpatient and consult pediatric rehabilitation medicine, transitions of care for adolescents and young adults with disabilities. The CP Research Network is particularly excited for Dr. Sarmiento, a young investigator / clinician who has been mentored by several clinicians in our network including her co-authors. She is also the recipient of an Accelerator Award to set priorities in adult CP research.

*Mary E. Gannotti, PT, PhD, Paul H. Gross, BA, Deborah E. Thorpe, PT, PhD, Edward A. Hurvitz, MD, Garey H. Noritz, MD, Susan D. Horn, PhD, Michael E. Msall, MD, Henry G. Chambers, MD, Linda E. Krach, MD

Graphic of headshot as an x-ray in deep blue and an eyeball in pink with its connection to the sight region of the brain.

Cerebral Visual Impairment Workshop

A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.

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.

Surgeons in blue gowns and wearing loupes perform surgery.

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

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

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

Early Detection of CP Webinar

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.

A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.

Dr. Joyce Trost Hired As Director of CP Registries

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

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

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