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.

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.

October 6 is World CP Day - Millioins of Reasons to Spread the Word

CP Research Network Featured at AACPDM

The Cerebral Palsy Research Network was invited alongside of the National Institutes of Health (NIH), the Patient Centered Outcomes Research Institute (PCORI), and C-Progress to teach early-stage investigators how to establish a successful research program at their institution during the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The nine-hour pre-conference tutorial featured presentations from each of these research and funding organizations to emphasize key steps for an investigator to get funding. The CP Research Network is differentiated from its co-presenters by being an organization that facilitates and conducts research.

In addition to presenting the network’s programs, registries, and tools, CEO Paul Gross held a breakout session for Q&A with interested attendees. “It was an honor to present our mission and vision alongside the largest public funders for research – NIH and PCORI,” said Gross. “The attendees also heard from Dr. Michael Kruer about his experience working with the CP Research Network to gain $3M in funding from NIH for his genetic causes of CP study.”

This pre-conference session fell on October 6 – World CP Day – when the CP Research Network Board of Directors has offered to match donations two-fold! World CP Day creates awareness about CP and much needed research around the globe. We are excited to be part of accelerating that research by educating new investigators to the field.

A three-panel banner of St. Louis Children’s Hospital and headshots of Dr. Toni Pearson and Dr. Bhooma Aravamuthan.

St. Louis Children’s Hospital Joins Our Network

Dr. Ton Pearson, with short brown hair smiling in a white lab coat, leads the Cerebral Palsy Center at St. Louis Children's

Toni Pearson, MD, Medical Director of the Cerebral Palsy Center at St. Louis Children’s Hospital is a pediatric movement disorders neurologist.

Dr. Aravamuthan, a movement disorders neurologist, smiles with dark rimmed glasses and long, brown hair in a white lab coat

Bhooma Aravamuthan, MD, DPhil, is a pediatric movement disorders neurologist at St. Louis Children’s Hospital who specializes in the treatment and research of cerebral palsy.

The Cerebral Palsy Research Network is happy to announce that St. Louis Children’s Hospital and Washington University in St. Louis have joined our network. Toni Pearson, MD, Medical Director of the Cerebral Palsy Center at St. Louis Children’s Hospital and her colleague Bhooma Aravamuthan, MD, DPhil, will lead both institutions in the participation in network research and quality improvement activities. St. Louis Children’s Hospital (SLCH) is a tertiary-care (a hospital that is highly specialized) children’s hospital affiliated with Washington University in St. Louis, and is the largest pediatric referral center in Missouri and the surrounding region.

The SLCH Cerebral Palsy (CP) Center is based in the Division of Pediatric and Developmental Neurology, and treats approximately 800 unique patients annually. The CP center cares for a diverse range of patients with childhood-onset conditions associated with motor impairment, including cerebral palsy as well as varied genetic, metabolic, and neurodegenerative conditions.

The core interdisciplinary CP clinical team is composed of 4 pediatric neurologists with subspecialty training in movement disorders, 2 pediatric physical medicine and rehabilitation physicians, physical therapists, an occupational therapist, a social worker, a nurse practitioner, and a nurse coordinator.

The CP Center works in collaboration with the Neurosurgery Center for Cerebral Palsy Spasticity (directed by Dr. T.S. Park), as well as colleagues in Orthopedic Surgery, the SLCH Pediatric Complex Care Clinic, and the Neonatal Neurology Clinic, to coordinate care for children with CP from infancy through adulthood.

CP Center faculty are engaged in research projects on the pathophysiology and clinical characterization of dystonia following perinatal brain injury, pediatric deep brain stimulation for genetic and acquired dystonia, and the clinical characterization and natural history of rare neurogenetic developmental motor disorders.

A grey banner with ‘MyCP Webinar Series’ and a photo of Mary Gannotti, PT, PhD; smiling and wearing a brown blazer.

Join our Webinar on Adult Wellbeing and Pain in Cerebral Palsy

How does your lived experience align with the initial results from our chronic pain study?

Mary Gannotti, PT, PhD, smiles with brown shoulder length hair, a red blouse and a brown blazer.

Mary Gannotti, PT, PhD

Compiling information about the chronic pain and wellbeing challenges many adults with cerebral palsy experience, sometimes on a daily basis, is an important priority for the Cerebral Palsy Research Network as we work to improve health outcomes for our community.

On Monday, July 19, at 8 pm ET, Mary Gannotti, PT, PhD, co-principal investigator of the CP Research Network’s adult study group, will present an update on our adult study of wellbeing and chronic pain.

Dr. Gannotti’s study seeks to gather cross-sectional data from 500 adults with CP to demonstrate health differences between adults with CP and the adult population overall. This interim report includes data from approximately the first 200 participants in the study.

“Members of the community will find it valuable to see how their personal lived experience aligns with many other adults with CP,” says Paul Gross, President, CEO and Co-Founder of the CP Research Network. “Dr. Gannotti will discuss how we plan to use these findings to support additional adult research and to advocate for policy changes in healthcare to improve health outcomes for adults with CP.”

Prior to Tuesday’s virtual event, MyCP webinar series registrants and MyCP members will receive a reminder with a link to the webinar. If you are not subscribed to the series, you can sign up for this individual webinar on our MyCP Webinar Series page.

The presentation will last for approximately 30 minutes and be followed by an open Q&A with Dr. Gannotti. All of our webinars are recorded and posted on our YouTube channel subsequent to the live webinar. You can also view Dr. Gannotti’s inaugural presentation after we initially launched the study in 2019.

Adults with CP can still participate in the study which is hosted in our Community Registry on MyCP.

The diagram patient priority framework from PSCORE shows an interrelationship among different interests in cerebral palsy care.

A step forward in Standardizing Patient Reported Outcomes

Hospitals and clinicians in the Cerebral Palsy Research Network will be able to track, learn from, and compare outcomes for their patient populations thanks to our selection of standardized patient outcome measures. The CP Research Network has collaborated with Dr. Unni Narayanan, the subject of our recent CP Stories series, at the Hospital for Sick Children in Toronto, Canada, to standardize a validated set of patient-reported outcome measures (PROMs) across the network. Working closely with Nationwide Children’s Hospital in Columbus Ohio and Dr. Narayanan’s PRIORITY-BASED SCALES FOR CHILDREN’S OUTCOMES – RESEARCH & EVALUATION (PSCORE) Program, the CP Research Network has released electronic versions of two PROMs to collate patient information across sites in our network.

The Gait Outcomes Assessment List (GOAL) and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) will ensure CP families can provide information and communicate their needs to clinicians in patient facing portals like Epic’s MyChart. On a wider scale this submitted data will also help improve treatment more widely in the CP community. Shared decision-making helps balance the input of doctors and experts with the priorities and preferences of patients and their families.

The patient priority framework from PSCORE shows an interrelationship among patient priorities, interventions and outcomes for people living with cerebral palsy.

The patient priority framework from PSCORE shows an interrelationship among patient priorities, interventions and outcomes for living with cerebral palsy.

In addition to these benchmarking capabilities, the PROMs allow patients and patient families to identify important goals, which clinicians can take into account as they make decisions about treatments. And the standardization of PROMs holds the promise to improve medical and surgical outcomes across the network.

Dr. Narayanan has been funded by the Canadian Institute for Health Research (CIHR) to study the impact of these tools in improving shared decision making.

Patient families can use these tools today in MyCP – the CP Research Network’s personalized platform for cerebral palsy resources. The CPCHILD and GOAL Questionnaires are available in the MyCP Community Registry that can be taken annually to track a child’s progress across numerous domains like activities of daily living, mobility or participation. Once a family takes the survey, they can download a PDF of their results which includes their important goals, and bring these results to an appointment with their CP focused physician or therapy team.

The CP Research Network will enhance these tools over time to provide summary reports that will include the scores and list of important goals to better support shared decision making. Parents of children under the age of 18 can sign up for MyCP and take these surveys now.