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.

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 Registry Development

The expert panel participants stand in front of a screen of virtual participants.

Participants in the National Eye Institute’s expert panel gather for a group picture on Sunday, June 23.

Cerebral Palsy Research Network Chief Executive Officer Paul Gross and Scientific Director Kristie Bjornson, PT, PhD were invited to participate in an expert panel to provide guidance to the National Eye Institute (NEI) in its effort to develop a registry for cerebral visual impairment (CVI). This event was held on Sunday, June 23 at the Perkins School for the Blind in Boston, MA. The attendees included NEI program officers, leading clinicians and researchers in the field of CVI and parents, teens and adults with CVI.

Two CP Research Network affiliated investigators, Drs Corinna Bauer and Karen Harpster, also participated in the meeting which was intended to review the purpose, aims and initial data collection envisioned for the registry. The opportunity to participate in this foundational meeting will allow the CP Research Network to align future data collection for CVI with the NEI registry to expand research possibilities for people with CP and CVI together. Drs Bauer and Harpster are currently planning a study of CVI over the lifetime for the network’s Community Registry. They presented a MyCP webinar with network Co-founder Michele Shusterman in May 2024.

The invitation from NEI to attend is an honor and reinforces our belief in our vision to continue to expand our national registry for cerebral palsy. Being identified as a sought out leader in the field of research registries is an important affirmation of our work in developing clinical and community registries as an integral part of the CP Research Network.

Functional Changes, Pain and Aging with Cerebral Palsy: A New MyCP Webinar

Ed Hurvitz, MD, Mary Gannotti, PT, PhD, and Jodi Kreschmer, MSW will present on pain and functional changes in adults with CP

The Cerebral Palsy Research Network is excited to announce that this month’s webinar will be on Monday, June 24 at 8 pm ET and it will focus on functional changes in adults with cerebral palsy (CP) and research findings about functional changes and pain. The webinar will be presented by the CP Research Network adult study group co-chairs Ed Hurvitz, MD, Professor, Physical Medicine and Rehabilitation and Mary Gannotti, PT, PhD, along with researcher and CP Research Network Community Action Committee member Jodi Kreschmer, MSW. We have organized the Adult Study Group to advance research for adults with CP.

There is a lack of information about what happens to adults with cerebral palsy as they get older. Many adults with cerebral palsy and clinicians are not aware of how and why their abilities to use their arms, legs, and to communicate may change with age. We will describe some of the reasons for these changes uncovered by our research and what questions you may want to ask your providers.

There is very limited information about how people with different abilities, with different clinical characteristics, and from different backgrounds experience functional changes and pain when they have cerebral palsy. The Cerebral Palsy Research Network Community Registry Adult Surveys on Function and Pain provide some insight about this. Please help us improve our understanding of what people with CP are experiencing in adulthood by becoming a part of our community registry. The registry gathers data on people with CP and their self-reported experiences. Our MyCP Webinar Series is intended to translate those research findings to be meaningful to community members.

The topics covered in our webinar will help participants be able to identify the reasons why adults with CP may experience functional changes or pain with aging and describe how common these changes are among other adults with CP. In addition, they will learn to identify ways to reduce the impact of pain and functional decline.

We will also discuss exercises and pain treatments you may be able to do at home, and provide you with resources to help you manage your health. We are hoping people will be inspired to participate in the Community Registry Adult Surveys on Function and Pain to help us gain more insights into supporting adults with cerebral palsy

Interested community members and clinicians can join this free webinar by registering with this link or below. Subscribers to our monthly webinar series will receive a link in email this coming Friday, June 21.

Functional Changes, Pain and Aging with Cerebral Palsy
Dr. Gannotti with long dark hair, purple sweatersand glasses explains her cerebral palsy study to a community member.

Article Details Successes, Challenges, and Future Directions of Our Community Registry

Dr. Gannotti standing in a purple sweater explain her work in cerebral palsy to a mom and adult son in a wheelchair

Dr. Gannotti stands among three of her five scientific posters explaining her work to community members who attended our annual meeting.

The Cerebral Palsy Research Network congratulates Dr. Mary Gannotti on her recent publication, “Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions” in the Disability and Health Journal. This article is the third in a series describing the preliminary results from surveys gathered under her leadership in the network’s study of wellbeing and chronic pain in adults with cerebral palsy (CP). This article describes not only the creation of our Community Registry, but also the development and execution of this study with adults who have CP.

Dr. Gannotti has championed the longitudinal study of adults with CP since the founding of the network in 2015. This publication provides an overview of the multi-year process to build a core set of patient reported outcome measures that capture the health of wellbeing of adults with CP. In addition, it describes some key high-level findings about chronic pain and how these findings have led to numerous additional studies that are currently active in the network including two different studies of lower back pain. Dr. Gannotti has been proactively promoting the potential for secondary analysis of this dataset and a tireless mentor of junior faculty inside and outside of the network. The prior two publications from the adult study were first authored by Dr. Cristina Sarmiento who is a physical medicine and rehabilitation clinician at Colorado Children’s and University of Colorado Health System.

The commentary on the registry also describes challenges in creating an online registry such as diversity issues across race, gender, socioeconomic status. She balances descriptions of the challenges with planned efforts to overcome the challenges. Dr. Gannotti has secured funding both from durable medical equipment provider Rifton and the American Physical Therapy Academy to invest in overcoming these weaknesses by expanding recruitment methods.

Members of the community interested in reading the article can review it here until July 15, 2024 at which point it will only be available a fee or to subscribers to the journal.

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 and CP

Headshots of Corinna Bauer, Karen Harpster and Michele Shusterman

Drs Bauer and Harpster and Ms. Shusterman will present on cerebral visual impairment.

The Cerebral Palsy Research Network will be hosting its May MyCP webinar on the topic of cerebral (or cortical) visual impairment (CVI) as a common co-occurring condition with cerebral palsy (CP). CVI impedes the brain’s ability to perceive and interpret what is seen through the eyes which can lead to developmental and learning challenges and may also impact fine and gross motor function. The webinar will be next Wednesday, May 22 at 8 pm ET. Corinna Bauer, PhD, Karen Harpster, PhD, OTR/L, and Michele Shusterman who are developing a study of CVI across the lifespan, will discuss basic concepts about CVI as well as the state of treatment and research for CVI in the CP population. Michele Shusterman will discuss CVI from the parent perspective.

Preliminary data indicates that people with CP are three times more likely to have visual impairments and as many as 87% of people with CP may have the visual perception dysfunction attributed to CVI. But vision and visual perception are currently NOT routinely screened for and/or evaluated as a standard of care for people with CP. There is also limited data available in the literature as to how vision is impacted in adults with CP.

Drs Bauer and Harpster will describe what is known and unknown about CVI and how they plan to study it using CP Research Network resources in both the pediatric and adult populations. Given the distribution of ages the webinar should be meaningful to parents and people with CP.

The CP Research Network has been engaged with the National Eye Institute of the National Institutes of Health to advise on the creation of a CVI registry. The Network is excited to present this new research concept and gather experience from community members to help shape the direction of our research and our registry. The webinar will be a mix of presentation and discussion.

Members of the community and clinicians are welcome to join this free webinar by registering in advance. The webinar will be recorded and posted to our YouTube channel.

Cerebral Visual Impairment (CVI) and Cerebral Palsy
Dr. Sarmiento with brown hair pulled back in a navy blue blazer and a broad smile

Adults with CP and Functional Decline

Cerebral Palsy (CP) is often defined in part as an early non-progressive brain injury or disturbance in neurological development that impacts the areas of the brain responsible for movement, posture and coordination.  There may be other areas of the brain affected as well. But as adults with lived experience with CP describe, the description of a static brain injury distracts from the reality of the downstream effects that it causes on the body.  The CP Research Network was founded in part to increase the amount of research about adults with CP.  Our patient-centered research agenda, Research CP, that was published in 2018 made clear that adults with CP wanted research to be focused on issues surrounding aging and functional decline.  In 2019, under the leadership of Drs. Mary Gannotti  and Deborah Thorpe, and in collaboration with many adults with lived experience, the CP Research Network launched its Adult Study of Wellbeing and Pain as its first study in our Community Registry.  This longitudinal collection of surveys is intended to capture current health and wellbeing for participating adults with CP and track it over time.   While the vast number of people living with CP are adults, recruiting sufficient numbers and diversity has proven challenging.  But with funding support from Rifton and the American Physical Therapy Association, and in collaboration with the CP Foundation, we have amassed enough participants to begin publishing some preliminary findings.

 

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 second network publication and an Accelerator Award granted in October. She focuses on issues of transition and adults with cerebral palsy.

In November 2023, Dr. Cristina Sarmiento, a young investigator in our network and Dr. Gannotti, an investigator focused on adults with CP, published initial findings on chronic pain in adults with CP.   More recently, Drs. Sarmiento and Gannotti published again on the findings related to functional decline in adults with CP in the Disability and Health Journal.   Their analysis shows that functional decline in mobility was the most common symptom reported among the adults surveyed.  Functional decline was most pronounced in Gross Motor Function Classification System levels III and IV.  These findings are just a few of the high-level results described in the article.  The article is available for free viewing until April 21, 2024.  Thanks to Dr. Gannotti for her persistence in recruiting for this study and for mentoring  Dr. Sarmiento and other junior faculty. Together they have turned our data into valuable information for the community and for researchers to understand more about what adults with CP are experiencing with their health and wellbeing.

We want to hear from you!

The adult study of wellbeing and pain mentioned in this blog post is still recruiting and interested participants can learn more or sign up at our community portal: MyCP.org.

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.