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.

Thanks to Drew Beamer and Unsplash for this shot of a crystal ball in an extended hand with a view of the horizon

Stellar Year – Even Brighter Future

Dr. Ed Hurvitz, holds a mic while speaking to CPRN investigators seated classroom style at our Chicago meeting

Forty clinician investigators, community members and advocates gathered in Chicago in May 2022 to advance the research of the network.

The year 2022 was stellar for the Cerebral Palsy Research Network on several fronts — the creation of numerous new studies and funding to support existing studies, such as one focused on adult wellbeing and pain. We have had invaluable engagement with the community through our 11 webinars and our in-person research meeting in May. Additionally, we have implemented measurable standardization of care at 12 of our hospital centers through our quality improvement (QI) program. Finally, our partnership with the National Center for Health, Physical Activity and Disability has brought wellness programming to the CP community, and our new partnership with the University of Pittsburgh has begun providing us with data coordinating services.

The change in our business model that we set in 2021 has blossomed into a critical funding source that will sustain our future research enterprise and strengthen our team and infrastructure. Our research sites are supporting the network not only by volunteering their time to contribute to the CP registry and our quality improvement processes, but also by paying a participation fee to support the personnel and other resources necessary to run a high quality research network. These fees have allowed us to hire Dr. Kristie Bjornson as our scientific director and Dr. Amy Bailes to lead our QI efforts. In addition, we have been able to retain a consulting firm that specializes in data collection embedded in the electronic medical record which is a unique aspect to our registry and care improvement model.

A colored bar graph shows sites in the CP Research Network and the number of patients they have enrolled in the CP registry.

Our CP Research Network’s clinical registry has grown enrollments by more than 50% in the past year.

Our research efforts are already seeing the benefits of these investments where our May in-person investigator meeting facilitated the creation of six new research studies for the network to advance in parallel with our nine existing studies. Our existing studies have generated six new manuscripts three of which were published in 2022 and more are coming for 2023. Registries grew to 7,500 patients in our clinical registry (up 50% from the prior year) and 2,058 in our Community Registry (up 41%). These registries are now amongst the largest CP registries in the world. Our genetics study is entering its fifth year and on track to enroll its target of 500 patient parent trios and will reveal many previously unknown factors in the cause of CP. That knowledge will in turn let us begin to personalize treatment in the future.

Our quality improvement efforts are aimed at advancing the quality of care for CP now. We have four active efforts that are showing sustained improvement at multiple centers for the assessment of pain in adults, the consistent diagnosis of dystonia in CP and the surveillance of hips, the top cause of pain in individuals with CP. We have increased the assessment of pain in adults from a baseline of 24% to more than 90% of the visits. Similarly, we have increased the consistency of dystonia diagnosis from a baseline of 42% to just shy of 60%. For hip surveillance, we have examined the consistency of hip surveillance at CPRN centers and we are now using our registry to help identify the patients that need frequent hip surveillance. These care efforts are being spread to additional centers and being written up as manuscripts for publication enabling the CP Research Network to influence the treatment of CP worldwide.

Our wellness programs are focused on keeping people with CP physically active because evidence shows us the importance of exercise for health of people with disabilities. The MENTOR program to which we educate and recruit adults in the CP community has been very positively received by the people who have participated.


Many times over the past few weeks, I have recognized the timeliness of MENTOR for me, given my life stage, CP journey, and the added impact posed by my other health conditions. The MENTOR program helps me see how to manage all of that by building/reinforcing skills around what I can control (e.g., mindset, level of activity, and nutrition). At the same time, the one-on-one opportunities to meet with staff have helped me refine my approach.
Marji
MENTOR graduate

While we are excited by what we have accomplished in 2022, we are anticipating an even more impactful 2023. We have a big announcement planned for the coming weeks which will further expand and accelerate our research and education efforts. We are already on track to submit six to eight new grants and publish several more manuscripts. We hope to complete recruitment for our adult study of wellbeing and pain while continuing to follow adult these participants over the long term to increase knowledge about aging with CP. We are planning to release three new toolkits to strengthen our educational offerings. And we hope improve wellbeing in the community with more fitness offerings.

Stay well, stay tuned and thanks for all of your support and engagement in our work!

Drs Lewis and Kruer pictured in a banner announcing a cerebral palsy webinar on genetics

Update on the Genetics of Cerebral Palsy

Dr. Sara Lewis, with short, asymmetric auburn hair and blue eyes wearing a black tank top.

Dr. Sara Lewis, a post doctoral research fellow in Dr. Kruer’s genetics lab at the University of Arizona, will present an update on Dr. Kruer’s CP genetics study.

The Cerebral Palsy Research Network will kick off its 2023 MyCP Webinar Series next Wednesday, January 11, at 8 pm ET with an update on its study about the genetic causes of cerebral palsy. Dr. Sara Lewis, a Postdoctoral Research Associate at Phoenix Children’s Hospital is working with Dr. Michael Kruer, to identify genetic causes of cerebral palsy and will present the preliminary findings from their research. She and Dr. Kruer, a pediatric neurologist specializing in movement disorders, will be available for questions and answers immediately following the presentation.
Dr. Lewis’ webinar, “Cerebral palsy genetics: opportunities for both research and clinic” will address three main questions:
  1. How are CP genetics studied and what are the key findings?
  2. What can genetics tell us about the changes in the brain from CP?
  3. What is the benefit of identifying genetic causes for a person with CP?

Dr. Lewis received her PhD in Neuroscience in 2015 with an emphasis in genetic neurodevelopmental disorders. Her work integrates human genetics with the fly model to study how genes leading to movement disorders change the brain. Fly models, and other animal models, allow researchers to conduct “pre-clinical” research, i.e., research that is has the potential to translate to humans. Her work also addresses the challenges of implementing genetic findings into the clinical environment. She is funded by the Cerebral Palsy Alliance Research Foundation (CPARF).

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

A blog header show Liz Boyer with blonde hair and blue eyes smiling broadly.

Consequences of Falls Study Results: MyCP Webinar

On Wednesday, December 7 at 8 pm ET, Liz Boyer, PhD, will present the preliminary findings of her study entitled the “Consequences of Falls in Individuals with Cerebral Palsy.” This presentation is based on data that was gathered in part in our MyCP Community Registry during the months of July and August 2022. This study seeks to close a knowledge gap to better estimate how the burden of falls differs over a lifespan and between gross motor ability in individuals diagnosed with CP.

Dr. Boyer is a Clinical Scientist at Gillette Children’s Hospital in the Center for Gait and Motion Analysis and an adjunct assistant professor in the Department of Orthopedic Surgery at the University of Minnesota. She received her PhD in kinesiology with an emphasis in biomechanics and motor control. Dr. Boyer has been with Gillette since 2015 when she started as a post-doc.

The subjects that participated in this study ranged in age from five to 76 years old and were self-reported as level I – III (ambulatory) using the Gross Motor Function Classification System. More research is needed to identify characteristics of individuals who experience the greatest number of injurious falls including psychological and societal consequences even if falls are non-injurious.

People interested in watching the webinar can sign-up on the MyCP Webinar Series page. Dr. Boyer will be available for questions and answers with the attendees following her presentation of results. The webinar will also be recorded and posted on our YouTube channel.

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.

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.

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!

Headshot of Dr. Adam Ostendorf for his webinar on cerebral palsy and epilepsy

Update on Epilepsy and Cerebral Palsy

A headshot of Adam Ostendorf, M.D. A smiling man with short brown hair wearing a black suit and red tie.

Dr. Adam Ostendorf will present the CP Research Network findings about people with CP and epilepsy.

Our April MyCP webinar, next Tuesday, April 19, at 8 pm ET, will provide an overview of our initial findings about people with epilepsy and cerebral palsy (CP). The webinar will feature Adam Ostendorf, MD, a pediatric neurologist from Nationwide Children’s Hospital, who is the principal investigator of our epilepsy research within the network. Dr. Ostendorf has used the CPRN Registry and validated outcome measures, to learn more about the quality of life for people with CP and epilepsy.

Dr. Ostendorf was funded by the Pediatric Epilepsy Research Foundation in 2018 to add epilepsy specific support into the CPRN Registry. Since that time, Nationwide and other centers with the CP Research Network, have been gathering data about the experience of children with epilepsy and CP and examining differences in treatment and outcomes for kids with epilepsy and CP versus those without CP. Dr. Ostendorf will share his findings and how these can lead to important research to improve outcomes for children with epilepsy and CP. His findings have ramifications for children and adults alike.

If you are interested in joining the webinar, you can register on our MyCP Webinar Series page. People who have registered for our whole series will receive a link to the webinar in email a few days prior. If you cannot attend live, we will post the webinar on our YouTube channel where subscribers will receive a notification that it is posted.

A bar chart shows the age bands and totals for people with cerebral palsy in our national registry.

Cerebral Palsy Registry Update

Headshot of Garey Noritz, M.D. Go to Gary Noritz’s profile

Dr. Noritz, a developmental pediatrician and internal medicine physician, will provide an overview of the current CPRN cerebral palsy registry.

Next Tuesday, March 29, at 8 pm ET, Garey Noritz, MD, the principal investigator of the Cerebral Palsy Research Network’s cerebral palsy registry, will present the latest findings from our registry for our next MyCP webinar. He is a developmental pediatrician and an internal medicine physician at Nationwide Children’s Hospital who treats children and adults with CP. The presentation is open to the public and characterizes the patient population – children through adults – that are captured in our national registry. Attendees will learn how the CP Research Network registry collects data and how that data is used to accelerate research. He will also share what we have learned about the more than 5,200 patients enrolled in the registry.

The Cerebral Palsy Research Network was founded out of a need identified by the National Institutes of Health (NIH) to establish a national registry for cerebral palsy (CP). Unlike countries with socialized medicine such as Australia or Sweden, surveillance of CP at a national level in the United States is exceedingly difficult and prohibitively expensive. The CP Research Network chose to build a “clinical” registry rather than a surveillance registry with the main difference being a focus on children and adults who were treated for CP rather than only whether they were born with CP. A clinical registry is an essential tool for planning research for CP, providing preliminary data to increase research funding success, and improving the treatments and outcomes for people with the condition.

MyCP webinar subscribers will automatically receive an email with the link to the webinar. If you are interested in joining this webinar or signing up for our series, register at: https://cprn.org/mycp-webinar-series/. If you cannot make the webinar, we will post a recording on our website and on our YouTube channel.

Dr. Kristie Bjornson in a bright green CPRN shirt and holding an orthotic.

CP Research Network Hires Scientific Director

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

Kristie Bjornson, PT, PhD, MS, has been hired by the CP Research Network to be the Scientific Director.

The Cerebral Palsy Research Network hired Kristie Bjornson, PT, PhD, MS to lead its scientific direction. Dr. Bjornson, featured in our CP Stories in April 2021, is a leader in the field of research for cerebral palsy. In her new role, Dr. Bjornson will lead the network’s effort to pursue public funding from granting agencies such as the National Institutes of Health, the Patient-Centered Outcomes Research Institute and the National Institute on Disability Independent Living and Rehabilitation Research. Dr. Bjornson brings multi-center clinical trial experience for various interventions for CP (i.e. surgery, injections, orthoses, and rehabilitation).

“I’m excited to merge my experience in clinical research in cerebral palsy with the power of the network,” said Dr. Bjornson. “There are so many important to questions to answer for our community and the network is a highly efficient way to conduct this research.”

In addition to her role as Scientific Director, Dr. Bjornson will continue as a site principal investigator for Seattle Children’s Hospital (SCH) where her first-hand experience with our registry will be invaluable to our future research endeavors as she has real world experience with how the registry can be used to make clinical research more effective. Under her leadership, SCH has become a significant contributor to the richness of data in the network’s cerebral palsy registry as SCH has enrolled its entire CP population. Understanding and leveraging the registry to plan new research studies is a great strength that Dr. Bjornson brings to the network.