The CP Research Network logo -- a support ribbon in shades of green for the letters C and P

CPRN Orthopedic Registry Elements Facilitate Creation of NINDS Orthopedic CP CDEs

The National Institute of Neurological Disorders and Stroke (NINDS) closed its public comment period on its latest Cerebral Palsy (CP) Common Data Elements (CDEs) and has now adopted a modified version of the CP Research Network’s orthopedic Registry Elements. These CDEs are intended to standardize the types of data collected for research in neurological conditions to foster data sharing and broader discovery. The CP Research Network developed data elements for orthopedic assessments and surgical procedures as part of the definition of its national registry in 2015. The adoption of these orthopedic data elements establishes a significant basis for research collaboration, as the CP Research Network registry is actively collecting data at more than fifteen sites in North America.

“The CP Research Network’s contribution to the NINDS’ CP CDEs is very important for accelerating neurological research,” said Dr. Walter Koroshetz, director of the NINDS. “Harmonizing data with large national registries like the CP Research Network’s enables more discovery and benefits the research community,” he continued.

The CP Research Network’s registry was developed in parallel with the NINDS’ CP CDEs, but it included data definitions for orthopedic and neurosurgical procedures common for CP from the outset. After the initial version of the NINDS’ CP CDEs were released, NINDS invited Paul Gross, president and CEO of the CP Research Network, to join the oversight committee for the CDEs. This collaboration has helped keep the CP Research Network Registry and the NINDS’ CP CDEs aligned to enable more research through the sharing of compatible data sets. The CP Research Network seeks to use the NINDS’ CP CDEs as a guideline for its registry development, but it also shares its work with NINDS.  The NINDS CP CDE team further organized and augmented the CP Research Network Orthopedic Registry Elements — changes that we plan to use to further revise our Registry Elements. The collaboration on the orthopedic elements allows this rich data definition to happen much more quickly than starting from a blank slate. The CPRN Registry Elements were initially developed and reviewed by a renowned set of orthopedic surgeons. Researchers that use the NINDS’ CP CDEs for orthopedics will be able to find additional collaborators within the CP Research Network that are already using these elements and may have significant preliminary data.

In the future, the CP Research Network intends to share its neurosurgical registry elements with NINDS. Because of the CP Research Network’s early traction in neurosurgery, its neurosurgical registry is well established and has captured a significant number of procedures since its launch in 2016. The Network looks forward to furthering its collaboration with NINDS in this important neurological aspect of CP research and interventions.

Blog post header featuring CPRN and University of Pittsburgh logos and a headshot of Dr. Wisniewski in a dark blue suit.

CPRN Partners with Pitt

The University of Pittsburgh seal in blue and gold.

The Epidemiology Data Center at the University of Pittsburgh will host the CP Research Network registries.

The Cerebral Palsy (CP) Research Network signed a strategic five-year research agreement with the University of Pittsburgh to provide the Data Coordinating Center (DCC) services for its growing research enterprise. Stephen Wisniewski, PhD, Professor, Co-Director of their Epidemiology Data Center, and Vice Provost for Budget and Analytics at the University of Pittsburgh, will become the DCC principal investigator for the CP Research Network effective October 1, 2022. The DCC provides essential research services for hosting our registries, designing our studies, and safeguarding our data. The partnership with the University of Pittsburgh will help the CP Research Network accelerate its mission to improve the lifelong health and wellness of people with CP and their families through high quality research.

Dr. Stephen Wisniewski in a blue suit, white shirt and blue tie with glasses, a full gray beard.

Dr. Stephen Wisniewski will lead Data Coordinating Center team at the University of Pittsburgh for the CP Research Network

“We are excited to be partners in research with the CP Research Network,” said Dr. Wisniewski. “Between their track record for engaging the extended CP community in research and our experience with multi-center trials, we believe we can help accelerate studies to improve outcomes in CP. We look forward to working closely with the CP Research Network to develop studies for the research questions that are most important to the CP community.”

The CP Research Network selected the University of Pittsburgh and Dr. Wisniewski as its new DCC partner to support its anticipated growth in research projects. Dr. Wisniewski’s track record with the ADAPT observational trial for traumatic brain injury and other successful publicly funded trials make him, his team and the University of Pittsburgh an ideal partner for the next phase of the CP Research Network’s research agenda. As the network nears the end of its second year of its five-year strategic plan, the number of studies under development to address its Research CP community-driven agenda has grown significantly. The CP Research Network’s registries, both central longitudinal research repositories capturing data about people with CP over multiple years, were recently highlighted during a workshop sponsored by the National Institutes of Health to report on and advance its strategic plan for cerebral palsy. The CP Research Network strategy calls for more publicly funded studies of CP for which Dr. Wisniewski and his DCC’s track record with NIH and other funders should increase the network’s success rate for grants and ultimately improving care for people with CP.

Drs Gad and Carmel in blue collared shirts with Gad in a blue blazer and Carmel in a lab coat.

Spinal cord stimulation and spasticity

Parag Gad, PhD, and CEO of SpineX smiles with an open collar blue shirt and dark blue blazer

Dr. Gad, CEO of SpineX, will present the preliminary data from their pilot study of noninvasive spinal cord stimulation in CP.

This month’s MyCP Webinar is on Monday, October 10 at 8 pm ET featuring a discussion about how noninvasive spinal cord stimulation can enable reductions in spasticity and improvement to gross motor skills. We have invited SpineX Chief Executive Parag Gad, PhD and CP Research Network Steering Committee member Jason Carmel, MD, PhD, to present a planned study of noninvasive spinal cord stimulation based on promising preliminary data developed by SpineX. Dr. Carmel, a pediatric neurologist who directs the Weinberg Family Cerebral Palsy Center at Columbia University, would lead one clinical site of this novel intervention for people with spasticity.

Although CP is largely due to brain injury, spinal cord circuits are altered by injury to the developing brain. Loss of motor and sensory connections alter the function of the spinal cord in CP and result in the spasticity which can impair the ability to walk, trunk control, other motor functions in addition to causing pain. Electrical stimulation has been shown to reduce spasticity and improves movement. Noninvasive spinal cord stimulation presents the potential to achieve these benefits with a wearable device. SpineX, a start-up company, has conducted a preliminary study with 16 people including people who can walk independently and wheelchair users.

Dr. Carmel organized a discussion at the CP Research Network’s annual research meeting to present the concept embodied in SpineX’s work for consideration in the network. Initially SpineX is seeking to conduct a trial using eight sites with one CP Research Network site at Columbia. If the trial is successful, it could be expanded to numerous CPRN centers.

Dr. Gad will present the evidence around spinal stimulation and explain the planned trial to the community and then be interviewed by Dr. Carmel to answer questions from the community about noninvasive spinal cord stimulation in CP and the trial. Community members interested in learning about this topic and technology can register for the webinar on cprn.org. The webinar will be recorded and posted to the network’s YouTube channel.

Dr. Amy Bailes with shoulder length hair, glasses, a brown jacket and salmon colored open collared shirt.

CP Stories: Dr. Amy Bailes Advances CP Care

Amy F. Bailes, PT PhD is the Director of Physical Therapy Research at the Cincinnati Children’s Hospital Medical Center and an Associate Professor in the University of Cincinnati’s Department of Rehabilitation, Exercise, & Nutrition Sciences. Her clinical work focuses primarily on the care of children with CP, while her research involves how physical therapy services are utilized, the use of measurement tools to treat CP, and novel CP interventions.

Dr. Bailes' eight grade photo shows her smiling broadly with a blue and black checkered shirt over a yellow turtle neck.

Dr. Bailes early exposure to young child with cerebral palsy while babysitting influenced her ultimate career choice.

Dr. Bailes has worked as a pediatric physical therapist for the better part of four decades, but it was during her teenage years that she was first exposed to CP. After agreeing to babysit for a neighborhood family whom she didn’t know well, she realized after a few evenings that the baby, a nine-month-old boy, seemed delayed. After bringing it up with the family, they confirmed her guess: the baby had severe CP due to an infection during pregnancy. The young Amy Bailes didn’t end up babysitting for the family for long, but the chance encounter led her to pursue a bachelor’s degree in physical therapy from Indiana University.
Dr. Bailes sitting on a rock in Sedona AZ with her husband and two daughters and a beautiful red and green landscape behind her.

Dr. Bailes decided early to combine her love of children, physical activity with her fascination with the brain.

“I became very interested in how the brain worked and controlled movement,” said Dr. Bailes. “I learned that as a physical therapist, I could combine my interest in the brain with my love for physical activity and children.”

Throughout her career, she has seen the field of physical therapy evolve dramatically, especially for children with CP: “We’ve learned so much about caring for children with CP. It’s really changed. And that’s been pretty exciting.” Within pediatrics, Dr. Bailes’ experience has been expansive. She has worked in acute inpatient care, inpatient rehabilitation, and outpatient care, as well.

Dr. Bailes is also quite interested in physical therapy dosing, which covers the frequency, intensity, duration, and timing of administering physical therapy to patients. A recent study that she co-authored in Pediatric Physical Therapy entitled, “Documenting Physical Therapy Dose for Individuals with Cerebral Palsy: A Quality Improvement Initiative” describes how quality improvement activities were used to increase documentation of therapy dose in the patient’s electronic record of physical therapy. Detailed dose documentation is important to help us understand what treatments are effective and for whom. Dr. Bailes is actively working to spread standard documentation methods to other medical centers so that vital information can be collated and used to inform current practice.

Dr. Bailes is also passionate about developing closer relationships between clinicians, patients with CP, and their families, about “sharing information with families that can empower them to care for their child,” in her words. Part of why transparency and information-sharing is important to Dr. Bailes is because the field has not always prioritized openness. When the Gross Motor Function Classification System (GMFCS) came into use, for example, it was common for clinicians to withhold a children’s classification from their family, on the basis that it might alarm them. This always struck Dr. Bailes as counterproductive: “It’s important—especially with a chronic condition like cerebral palsy—for the individual and the family to understand the condition. This information doesn’t really belong to us. It belongs to them.”

This is one of the reasons that Dr. Bailes initially became involved with the CP Research Network: “I like that CPRN is about breaking down barriers between researchers and families/individuals with CP to improve care and outcomes,” she said. Dr. Bailes is passionate not only about breaking down the barriers between professionals and families, but also between professionals in adjacent fields. The logic is straightforward: when specialists actively work together, everyone benefits. Strict separation between disciplines can be a problem in CP—information and context is inevitably lost as the patient bounces from one specialist to another—but Dr. Bailes is optimistic that things are moving in the right direction. Part of her optimism stems from the power of groups like the American Academy for Cerebral Palsy and Developmental Medicine and their willingness to collaborate and treat from an interdisciplinary perspective.

Dr. Amy Bailes with shoulder length brown hair, glasses smiling with a while shirt and blue jacket.

Dr. Bailes is the CP Research Network Quality Improvement coach work with different disciplines to rapidly improve care for people with CP.

Likewise with CPRN and its power to facilitate connections: “I have learned so much. I have become a better person, clinician, and researcher because of these relationships,” Dr. Bailes said. Currently, she coaches four quality improvement teams within CPRN. These four teams, respectively, are focused on:
  1. improving care for adults,
  2. improving the assessment of dystonia,
  3. improving hip surveillance, and
  4. decreasing intrathecal baclofen pump infections.

When asked what she most valued about her work, Dr. Bailes was already looking toward the future: “One of the most rewarding parts of my work is planting seeds for the next generation of researchers and clinicians to carry the work forward.”

The cover of the final program for the annual meeting of AACPDM with a picture of Las Vegas at night

Our Impact Grows: AACPDM Meeting

The cover of the final program for the annual meeting of AACPDM with a picture of Las Vegas at night

The final program of the annual meeting for the American Academy for Cerebral Palsy and Developmental Medicine in Las Vegas

Clinicians and researchers who focus on cerebral palsy (CP) gather in Las Vegas, Nevada, this week for the meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). It is the first in-person meeting in three years, and the CP Research Network will be there in force. Our work will be spotlighted in three mini-symposia and three morning seminars, as well as one paper presentation and one scientific poster. All are geared toward spotlighting not only the results of our research, but also how engagement in our network can facilitate continued research and the implementation of evidence-based practices to improve outcomes for people with CP.

The mini symposia will be two hours in length total with a short discussion after. Topics include:

  • Building a Center of Excellence in Cerebral Palsy: Care Delivery Models Across Cerebral Palsy Research Network Sites – Laurie Glader, MD, a developmental pediatrician, CP Research Network Steering Committee member and Scientific Co-chair for the AACPDM meeting, will lead a presentation and discussion of different “models of care” from leading centers in the CP Research Network.
  • The State of Tone Management in Children with CP in North America: What Can We Learn from Each Other? CP Research Network investigator Sruthi Thomas, MD, PhD, is leading a session with other physicians from the network to discuss different strategies for tone management.
  • Using Quality Improvement (QI) to Change Systems and Improve Care in Cerebral Palsy – Amy Bailes, PT, PhD, and CP Research Network QI coach, will lead a discussion including clinical leaders and consumers about three of our active quality improvement initiatives including adult care, dystonia diagnosis, and hip surveillance.

Our morning seminars, each of which are one hour in length, include:

  • How to Participate in Multi-center Clinical Research and Quality Improvement (QI) with the CP Research Network
  • NINDS Cerebral Palsy Common Data Elements for Lower Extremity Orthopedic Interventions
  • Communication is a Gateway to Participation: State of the Science and Future Directions

And our free papers and posters include:

  • The Development and Sensibility Evaluation of the CPCHECKList© – A Comorbidity Index for Severe Cerebral Palsy and;
  • an Update from the Cerebral Palsy Research Network Registry.

These symposia, seminars, posters, and papers all seek to improve care and advance research at the national level. The breadth and depth of the network’s activities are very visible at this annual meeting and will draw new clinician researchers into our circle, eventually expanding our impact.

Dr. Laurie Glader, Director of the Cerebral Palsy Program at Nationwide Children's, with shoulder length blond hair smiling.

Research CP: Progress Report

Next Wednesday, September 14th, Dr. Laurie Glader will lead a MyCP webinar updating participants on the progress of our patient-centered research agenda established in 2017 through our Research CP program. Research CP was run by the Network with the goal of setting a patient-centered research agenda for CP. It was funded by the Patient-Centered Outcomes Research Institute. The program included a webinar series, a collaborative agenda setting and prioritization process, and concluded with an in-person workshop in Chicago in June 2017. The results of this process, published in 2018 in Developmental Medicine and Child Neurology, can be found on our website. Since that time, the CP Research Network has used the findings from Research CP to guide our research investments and study development.

This webinar will allow the CP community to see the progress that the Network and the creation of the cerebral palsy registry have had on advancing the pace of CP research and answering the questions about CP that were raised through the Research CP program.

After the presentation, Dr. Glader, a developmental pediatrician who directs the CP program at Nationwide Children’s Hospital in Columbus, Ohio and is a member of the CP Research Network Steering Committee, will be available to answer questions from the community about current and future CP research network projects.

The webinar is free and will be recorded for people who cannot attend. Please join us for the presentation and discussion at 8 pm Eastern Time via Zoom. The presentation is open to the public and will have content that is meaningful to community members of all ages, clinician researchers and companies serving the CP community. You may register to receive an invitation to the webinar or a notification of when we post the recording.

Three headshots of Cerebral Palsy researchers Aravamuthan, Kruer and Gross

CPRN Investigators To Speak at NIH Cerebral Palsy Workshop

The banner for the NIH meeting on the state of cerebral palsy research with a graphic of a brainThe National Institutes of Health (NIH) are hosting a virtual public workshop on the state of cerebral palsy (CP) research starting next Wednesday, August 17 and August 18 that features three investigators from the CP Research Network. The meeting has been organized in response to Congressional requests to provide an update on the NIH Strategic Plan for Cerebral Palsy which was published in 2017 following two CP workshops held in 2014 and 2016. The organizers describe the purpose of the meeting as “to provide a forum for researchers, clinicians, and people with or affected by cerebral palsy to share updates on research progress and new opportunities since the publication of the Strategic Plan.” The CP Research Network encourages interested members of our community to register and join the online meeting.

The meeting is organized to follow the three priorities of the strategic plan starting with basic and translational research, and then clinical research and ending with workforce development. Drs Aravamuthan and Kruer, funded by NIH for their work in CP, will provide updates on their research progress on Day 1. Both are movement disorders neurologists with Dr. Aravamuthan specializing in dystonia in CP and Dr. Kruer on the genetic causes of CP. CP Research Network Chief Executive, Paul Gross, will speak on the use of CP Registries in research on Day 2. Each day will include between 40 and 80 minutes of discussion moderated by NIH staff. This meeting will include discussions of research progress and needs across the lifespan from neonatal development to adults with CP.

CP Stories: Duncan Wyeth shown in a grey jacket with silver hair introducing Sheryl Hine.

CP Stories: For Paralympian Duncan Wyeth, It All Began with a Red Schwinn

A young Duncan Wyeth with curly hair, a dark blue suit and red tie speaking into a microphone.

Duncan on the Paralympic Committee and as an executive at United Cerebral Palsy.

If you subscribe to the idea that the baby boomer generation officially started in 1946, then Duncan Wyeth was truly one of the first—he was born in March of that year, just thirteen months after his father had come home from World War II, wounded during the Battle of Anzio. At a hefty 10 pounds 6 ounces, Duncan was by no means a preemie, as is common for people with cerebral palsy (CP(. But the birth itself was complicated, and the labor lasted for thirty-six hours. “It’s not surprising that I experienced a lack of oxygen,” Duncan joked, as we spoke over Zoom.

And so when baby Duncan started falling behind on common developmental milestones, this, too, was unsurprising. A few months after Duncan’s first birthday, his parents, Barbara and Irving, took him to a clinic in Detroit, roughly 100 miles from where they were living in Lansing, Michigan, where Duncan’s father was attending Michigan State on the G.I. Bill.

In addition to a formal diagnosis of CP, Irving and Barbara also received a sobering prognosis: they were told that he would never walk, would have an intellectual disability, and would probably be dead by forty. The doctors, in short, told them to place Duncan in an institution and go have another baby. “In 1947, that was not a cruel, uneducated prognosis,” Duncan said. While Duncan’s parents quickly came to terms with the diagnosis, they were, to their credit, skeptical of the prognosis the doctors had offered. This skepticism was arguably the first of several major decisions Barbara and Irving made well. In the words of Duncan: “I’ve always said that the most important lesson in life is ‘choose your parents well,’ and I had the foresight to do that.”

Cerebral Palsy was still poorly understood at the time—United Cerebral Palsy wouldn’t be founded until a couple years later, in 1949—but as Duncan neared school age, his parents were proactive in getting him the physical therapy and the pre-K social skills he needed. They also, crucially, allowed Duncan to be a kid, to take risks. “My parents not only allowed me to go outside my comfort zone, they encouraged it,” he said.

In kindergarten, they made another major decision that would pay dividends: they bought him a bicycle. At first, the bike served a pragmatic function. “I would never have been able to keep up with my playmates, go to the local playground, etc. if I hadn’t been given that bike. It really provided me with the mobility to get around.” Duncan needed training wheels, but he was unconcerned. The bike was, in his words, the “great equalizer.”

In second grade, though, Duncan received an upgrade: a beautiful bright red Schwinn with a small, battery-operated horn. That summer, he made sure the bike was well-loved: “I rode that thing constantly, everywhere. Whether I needed to or not.” At the time, summer was something of a double-edged sword for children with CP. It meant freedom, yes, but most children received their physical therapy primarily through the public school system which, of course, was on break in the summer. If a child wasn’t receiving private physical therapy, then summer usually meant a step backward. Some of the progress made during the school year would inevitably be lost.

But when Duncan returned to school in the fall of third grade, his doctor was confused. “Duncan isn’t up on his toes as much when he’s walking,” the doctor said to Duncan’s mother. “You’ve found some way for him to have physical therapy in the summer, I’m guessing?”

“Well, no, I wonder what’s different,” said Barbara. “This spring he got a new bicycle, but that’s the only thing I can think of.”

Unlike most children with CP, Duncan’s condition had actually improved over the summer—he was notably less spastic, ostensibly because of all the exercise he had been getting on his bike. This Schwinn would mark the beginning of a lifelong love: “The cycling was physical therapy, but it wasn’t physical therapy that required a licensed therapist or insurance coverage. And I liked it. I was doing something.”

Duncan’s parents gave him the Schwinn for the same reason any parent would do so, but it’s hard to overestimate how radical the decision was at the time. Measured, supervised physical therapy was slowly becoming a part of any CP regimen, but common exercise—working up a sweat while riding a bike up the nearby hill, say—was thought to be harmful to the overall health of a person with CP. “Exercise was contraindicated, because the belief was the stress would exacerbate my spasticity,” Duncan explained. In this regard, Duncan’s parents were almost a half-century ahead of the research.

Duncan Wyeth sits on a sand beach facing lake Superior in a blue USA jacket with his bicycle.

From second grade on, cycling has been a key part of Duncan’s life even at 76 years of age.

To say that cycling became a hobby for Duncan would be an understatement. He would continue to cycle in high school—roaming through the streets of Taipei, where he lived for two years while his dad taught at National Taiwan University—and then through his university years as well, first at Alma College and then at Michigan State, just like his father. In his twenties, Duncan joined a touring bike club, participating in weekly rides, including century rides. Not until his thirties did he begin to seriously compete in disability sports, receiving one gold medal and two silver medals in the National Cerebral Palsy games. A few years later, he would compete internationally—first at the international Cerebral Palsy Games, where he was the first American to receive a cycling medal. At the 1988 Paralympic Games in Seoul, he placed fifth out of more than forty competitors. This marked the beginning of his work with the Paralympics, which lasted several decades: in ‘92 in Barcelona he served as a cycling coach and member of the leadership team, and then at the Atlanta Paralympics in ’96 as the prestigious “chef de mission” for the U.S. Paralympics team.

During this time, he also served as the voting representative for athletes with disabilities on the United States Olympic Committee for two Olympic cycles of four years each. In ’97, he was elected to the International Paralympic Committee (IPC) and would later become the vice president. In 2000, the American Academy for Cerebral Palsy and Developmental Medicine established the Duncan Wyeth Award, which annually recognizes an individual who has made significant contributions to sport and recreation for persons with disabilities. While Duncan stopped competing around this time, he still cycles on a regular basis. “I am convinced that at age seventy-six, I am still as mobile and as active as I am in large part because of a physically active, sporting lifestyle.”

Duncan Wyeth in a bright red USA check and blue helmet sits in his recumbent trike smiling.

Duncan Wyeth has not only been the recipient of several awards and medals, he also has had an award named after him by the American Academy for Cerebral Palsy and Developmental Medicine.

Duncan is retired now, or as he likes to call it, “unemployed by choice.” But he has chosen to stay involved with the CP and disability community more broadly for many reasons. To understand one such reason, we need to briefly return to Duncan’s eighth-grade English class. His teacher, Mr. Porter, was a friendly, charismatic man who had become disabled after contracting polio as a child. “Mr. Porter was the first professional disabled adult I’d ever encountered, and therefore my first significant role model,” Duncan said. His teacher was proof that it was possible for a person with disabilities to have a fulfilling, ambitious professional life. For many young people with disabilities, they either never meet that adult role model or do so too late. Throughout his adult life, Duncan has taught and presented at schools with abled and disabled students alike in the hopes that he might serve as an example of what is possible. These exchanges need not be particularly complex: it is enough, in Duncan’s words, to enable a young disabled student to realize, “I can do that.”

He has also chosen to stay involved with organizations like United Cerebral Palsy (UCP) and the Cerebral Palsy Research Network (CPRN) to ensure that others have access to sorely needed resources and support systems. The types of resources that CPRN offers are largely in-step with the research, but Duncan particularly appreciates that they reflect what people with CP actually want. “One of the reasons I’ve been impressed by CPRN is their real desire to listen to the consumer voice and input so that programs and services are consumer-focused,” he said. To this end, Duncan also appreciates the close relationship between the community and its members: “There’s always research going on, all kinds of surveys that people with CP can participate in. They can contribute to a knowledge base that’s really going to move the needle.”

Duncan has done a fair amount of moving the needle himself, consistently pushing his limits and defying expectations. But he was resolute that his accomplishments wouldn’t have been possible without the support he’s received: empowering, passionate parents; the opportunity to pursue a college education; the chance to travel the world and represent his country; years of engagement in meaningful employment. “I am where I am today because of all the steppingstones I’ve had along the way,” he said. “The economic security, rich and varied learning opportunities, wise and caring mentors, and a personal commitment to progress. If I hadn’t acquired over the years the skillset needed to navigate an unfriendly system, there’s no way in hell I’d be who I am in 2022.”

Grip Study Results: MyCP Webinar

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

On Monday, June 20 at 8 pm ET, Ed Hurvitz, MD, will present the preliminary findings of his study of grip strength as biomarker for body composition in cerebral palsy (CP). This presentation will appeal to all adults with CP and parents/caregivers alike because of the importance of understanding the role of body composition to lifelong health in CP and risks it may present to members of our community. Dr. Hurvitz is the chair of Physical Medicine and Rehabilitation at the University of Michigan and a leading researcher into challenges that people with CP face as they age.

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz will present the findings from his pilot study on Grip Strength

Dr. Hurvitz was the subject of last week’s CP Stories blog post that spotlights members of the extended CP community for their role in championing research either as a passionate adult with CP or caregiver or as a clinician/researcher committed to improving health outcomes for people with CP. He leads a group of researchers at the University of Michigan that study a number of health and fitness related outcomes for adults with CP. He is also a member of the CP Research Steering Committee and chairs its Adult Study Group.

The Grip Study pilot received funding from the Foundation of Physical Medicine and Rehabilitation in October 2020. In Monday’s MyCP webinar, Dr. Hurvitz will present that rationale for the study, the findings from the pilot study conducted at the University of Michigan and his plans to expand the study within the CP Research Network to validate its findings in a multi-center context. The presentation will be followed by an open Q&A. People interested in watching the webinar can sign-up on the MyCP Webinar Series page to receive the webinar link. If you have registered for the MyCP webinar series, there is no need to register again. The link will be emailed to you prior to the start of the webinar. Join us!