CPRN (Cerebral Palsy Research Network) news updates everything CPRN is doing for, and within, the cerebral palsy community. You will discover updated research information, new location sites for the Cerebral Palsy Registry, and more for you to check out today!

St. Louis Children's Hospital, flanked by two women, pediatric neurologists, who lead the CP Center and participation in CPRN

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.

Dr. Laura Gilbert, with shoulder length brown hair and a green shirt, smiles broadly. Her dystonia abstract won her an award

Dystonia Agenda Takes Center Stage at Child Neurology Society Meeting

Laura Gilbert, DO, a pediatric neurologist, with shoulder length brown hair and a dark green shirt, smiles broadly.

Laura Gilbert, DO, has won a Junior Member Award from the Child Neurology Society, for her abstract on a patient-centered dystonia research agenda.

Dr. Laura Gilbert, a pediatric neurologist at St. Louis Children’s Hospital, has been selected to present our Dystonia in Cerebral Palsy patient-centered research agenda at the Child Neurology Society (CNS) meeting in Boston, MA in September 2021.

Her talk, entitled, “Top 10 Areas of Research Need for People with Cerebral Palsy and Dystonia: A Novel Community-driven Agenda,” is based on collaborative work she carried out with the Network to engage the community in a research priority setting process for dystonia in CP in 2020.

“Dr. Gilbert played a significant role in the organization and analysis of our dystonia agenda setting process,” said Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders specialist from Washington University in St. Louis. “She is a smart and savvy burgeoning clinician researcher. It’s been a gift to see her interest bloom in dystonia in CP.”

The Child Neurology Society gathers neurologists annually to advance research and the treatment of pediatric neurological conditions. The live platform presentation has been selected as one of the top 20 abstracts submitted to the meeting. Further congratulations are in order for Dr. Gilbert who will be recognized as one of four Outstanding Junior Members for her work.

Her talk, and talks by her mentor Dr. Aravamuthan, will increase the focus on CP at this year’s CNS meeting. This increased focus will improve child neurologist awareness of issues faced by people with CP and promote research opportunities in the field.

CPRN’s progress as a Learning Health Network is published!

The Cerebral Palsy Research Network’s progress as a Learning Health Network (LHN) has been published in the Journal for Pediatric Rehabilitation Medicine this past week.

Primary author Amy Bailes, PT, PhD, published a self-assessment from leaders in the Cerebral Palsy Research Network using a tool developed by Cincinnati Children’s Hospital called the Network Maturity Grid (NMG).[1] The NMG is used to detail the maturation of necessary infrastructure and processes to create learning networks (LNs).

Bailes’ publication, the fourth since the CP Research Network’s inception six years ago, provides a glimpse into future directions for the network’s development. It details a standardizing scoring rubric used to assess progress across six domains including:

  • Systems of Leadership
  • Governance and Management
  • Quality Improvement
  • Engagement of Stakeholders
  • Data and Analytics
  • Research

The results were tabulated and graphed to provide insights into progress in each domain and areas for improvement.

The CP Research Network’s leadership team amalgamated this analysis to identify key investments that will improve our network maturity over the next five years. Moving forward, these investments will be centered on leadership development, financial sustainability, quality improvement training, the capture of patient-reported outcomes, and enhancing the quality of data collection.

The purple cover of the Journal of Pediatric Rehabilitation Medicine has its title and graphics of children playing, a person in a wheelchair, walkers and helping hands inside of green, pink and orange circles.

The cover of the Pediatric Rehabilitation Medicine.

The Network will incorporate the NMG tool into annual planning. Investments will be measured over the course of a five-year strategic plan for 2021-2025.

Members of the professional and academic community can access the article online with a Journal subscription. Community members may download the original article (prior to revisions required by the editors) from our website.

CP Research Network Launches MyCP Fitness Program with Staying Driven

CP Research Network Launches New Fitness Program

We are excited to announce a new wellbeing program in partnership with Staying Driven and Steph “the Hammer” Roach! Beginning Tuesday, June 8th at 7 pm ET, Staying Driven coaches will offer virtual adaptive fitness classes exclusively to registered MyCP community members!

Steph 'The Hammer' Roach, Adaptive Fitness CoachStaying Driven - Virtual Adaptive FitnessStaying Driven is a virtual adaptive fitness program founded by Stephanie “the Hammer” Roach. An adult with CP and a former CrossFit trainer and gym owner, Steph shifted her business during the pandemic to virtual classes for people with disabilities. She and her staff of adaptive fitness trainers offer multiple classes a week for people with disabilities.

The CP Research Network has arranged for MyCP members to be able to attend up to two classes per week, free of charge!

To be eligible, you need to complete these registration requirements:

  1. Be a current member of MyCP (joining is free). Parents of teens under 18 need to be the active member.
  2. Participate in at least one MyCP survey (a list of available surveys can be seen here).
  3. Sign up for a free Zoom account for class registration.
  4. Read and sign the waiver for Staying Driven and the CP Research Network on the sign-up page

Are you ready? Go sign up!

How it works:  MyCP members who follow the steps above will receive an email from the CP Research Network with the link to the Zoom Registration for the fitness class with Staying Driven. Steph, or one of her other coaches, will run the class. The participant uses the link to register for each class.

When? Saturdays at noon ET/9 am PT or Tuesdays at 7 pm ET/4 pm PT

What should you bring? A water bottle, a hand towel and a positive attitude.

What about resistance or weights?  Classes are adapted for people of all ages and abilities. Steph will encourage you to gather items from around your house or apartment to participate. If you have a personal care attendant or a caregiver that wants to be involved, they are welcome to attend to assist.

What if I cannot make these times or I want to work out more often? The MyCP Fitness program only supports these two days and times. Staying Driven has monthly memberships that will allow you access to all of the regular programming if you are interested.

Do I need a note from my doctor? A doctor’s approval is up to your discretion. Think of it as joining a gym — the gym doesn’t require a note from the doctor, but the waiver makes clear that you are responsible for making the appropriate health choices for yourself.

Join us for this new and exciting program made possible through your generous donations to the CP Research Network!

New CPRN Website

A Labor of Love: Our New Website

Marquis Graduating Walking off stage with a big smile using his walker

The new CP Research Network website on a mobile device

The Cerebral Palsy Research Network will launch its new website – combining all four of its web properties – this Monday, May 24! Our extended community will benefit from this single rich repository of information, resources, research and collaborative tools. In order to learn how to maximize the benefits of our new site, it will be the subject of our next MyCP Webinar on May 26 at 8 pm ET.

Founders Paul Gross and Michele Shusterman will provide background information on the creation of merged site, talk about the design principles and walk attendees through the new user experience, including plans for future enhancements to MyCP.

In January we announced the merger of CP NOW, including its toolkit, wellbeing resources and CP Daily Living blog, with CPRN and its MyCP community engagement site. Carefully sorting how to organize our four web properties was a key step to bringing together CP NOW and the CP Research Network. The new website, found at https://cprn.org, focuses on the four cornerstones of our mission:

  • Engaging the community in research and sharing their lived experiences;
  • Research and implementation of evidence-based health care for cerebral palsy;
  • Educating community members of all ages with content reviewed by experts in CP care;
  • Wellbeing programs for optimizing life-long health.

During this webinar we will demonstrate how to get the most value out of the network and MyCP, including how you can contribute to improving outcomes for people with CP.

Please join us! You can register here: https://cprn.org/mycp-webinar-series/

CPRN Annual Investigators Meeting, 2021

Annual Conference Sparks Innovation and New Research Ideas

Forty-five clinicians from 28 academic medical centers came together on Zoom last month for the Cerebral Palsy Research Network’s fourth annual investigator conference.

Marc Randolph, cofounder and original CEO of Netflix

The two-day online gathering featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared pearls of wisdom on decision-making and growth to our diverse audience of research leaders.

Participants, including clinicians from the National Institutes of Health, discussed a range of network studies, including the relevance of genetics in cerebral palsy diagnosis, and brainstormed potential new areas in dystonia research and building capacity to care for adults with CP. 

The meeting also enabled the CPRN team to define goals for an updated 2021-2025 strategic plan, including expanding leadership systems, ensuring financial sustainability, engaging community members, and strengthening research and quality improvement projects. 

“This year, we were able to make extensive use of breakout rooms for discussions and collaborations among smaller groups of investigators,” says CPRN President and Chief Executive Officer Paul Gross. “We were fortunate to have support from the Weinberg Family Center for Cerebral Palsy, making for smooth logistics.”  

Moving to a virtual format proved to be a successful venture with the format and progress of CPRN’s 2021 conference receiving praise from the attendees.

“It was great,” wrote Dr. Ed Hurvitz, chair of Physical Medicine and Rehabilitation at the University of Michigan. “The best Zoom meeting of the year for content, for career development, and being able to connect a bit with friends old and new.”

Paralympian, advocate, and community advisor Duncan Wyeth, also in attendance, remarked: “I have acquired more knowledge and insight over two half-days about my disability and potential system mechanisms to address that disability than at any other time in my life. This meeting gives me great hope and expectations for the countless individuals who will know an enhanced quality of life because of this learning network.” 

Thank you to everyone who gave their time for this important conference. It has set us on an excellent trajectory for 2021 and beyond. We greatly appreciate the commitment of our dedicated investigator team and all their hard work advancing the care of people with CP.

Kristen Allison, PhD, Bhooma Aravamuthan, MD, DPhil, Amanda Whitaker, MD

CPRN Investigators To Detail Important Findings

Three researchers from the Cerebral Palsy (CP) Research Network will present scientific findings at this year’s American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting.  

Kristen Allison, Ph.D., a speech pathologist and researcher at Northeastern University, will present “Speech and Language Predictors of Participation in Children with CP,” research made possible through the CP Research Network’s community registry hosted at MyCP.org.  

Allison’s research stems from parent surveys sharing the speech and language capability of children with CP and insights about their interactions with peers and common communication breakdowns due to speech and language impairments.    

Pediatric movement disorders neurologist Bhooma Aravamuthan, MD, DPhil, was also able to collate data through MyCP.org. She will present her findings on community attitudes toward a CP diagnosis and how a complete explanation of causes of CP can benefit those with the condition and their families.  

A third presentation, powered by efforts within the network, will be led by Amanda Whitaker, MD, an orthopedic surgeon who has been examining practice variation in hip surveillance at centers in the CP Research Network. Her findings are already shaping quality improvement protocols as part of the network’s drive to become a learning health network.   

AACPDM’s 75th annual meeting with take place on October 6 to 9, 2021, at Quebec City Convention Centre in Quebec, Canada.

The CP Research Network remains committed to enabling clinicians to conduct research that advances the care of people with CP via our community registry and learning health network.  

Subscribe to our newsletter to stay up-to-date on all our latest CP news. 

Jacob Kean, PhD, Associate Professor, University of Utah

Discovery and Improved Health from your Lived Experience

Jacob Kean, PhD, Associate Professor, University of Utah

Jacob Kean, Ph.D., University of Utah

Next Tuesday, April 20, at 8 pm ET, the Cerebral Palsy Research Network will be hosting a MyCP webinar about how innovative technology is advancing CP research. Dr. Jacob Kean, Associate Professor in Health System Innovation and Research at the University of Utah, will be presenting how we can transform healthcare for CP by harnessing information from your lived experiences.  

Dr. Kean will explain how our partnership with Datavant is opening doors to breakthroughs from community participation in MyCP, receiving care at a CP Research Network Center, or by participating in our research.  

Datavant allows us to connect many different sources of information about a person’s health. For example, by connecting information generated by a fitness tracker like a FitBit or a smart phone with our registries, the CP Research Network could find patterns of movement that lead to better cardiovascular health.   

By organizing millions of pieces of information about living with cerebral palsy we are on the path to unique discoveries. These exciting opportunities are possible because our community members are granting permission for us to use their information in ways that takes advantage of new technology trends, while simultaneously maintaining their privacy.  

Tune in by signing up for the webinar and learn how technology and information sharing is allowing us to move CP research into the forefront of scientific advancements.  And if you haven’t already, consider joining MyCP!

New Website Sneak Peak

Here’s a sneak peek at our new website!

Thanks to our merger with CP NOW and new research studies already off the ground, it’s been an exciting year so far for the CP Research Network. So, what’s next? Our new website!   

 Since our January merger, our team has been busy integrating four websites into one to create a new online home – cprn.org – a place where we will bring together our community, research efforts, education, and wellbeing programs.   

Here’s a sneak peek of what’s to come!   

To make things easier to navigate, our one platform, CPRN.org, will feature the four cornerstones of the combined organization:  

1) Community  
Join a committed group of community members on the MyCP platform at CPRN.org. All are welcome, including adults with CP, parents, and caregivers, clinicians, researchers, and advocates shaping impactful research to improve the lives of people with CP.  

2) Research  
The Cerebral Palsy Research pages of our soon-to-be-released site will fill you in on our active studies and highlight opportunities to participate in ongoing research to improve healthcare outcomes for people with CP.  

3) Education  
Please take advantage of our educational resources and programs to help navigate CP from diagnosis to therapies, treatments, and interventions to maintaining mental and physical health and transitioning to life as an adult with CP. You’ll find many toolkits, guides, and resources all ready to download on our education webpages.   

4) Health and wellbeing  
Log on for programs to maintain and improve physical health and wellbeing. We are working with our trusted partners to implement regular opportunities for community members to participate in healthy activities in their communities.  

Excited? We are too! We’ll reveal our launch date soon, but for now, please keep swinging by cpdailyliving.com, cpnowfoundation.org, cprn.org, and mycp.org for everything you need to know about the CP community.    

National Cerebral Palsy Awareness Day 2021

Double Down on Cerebral Palsy Awareness

Today is National Cerebral Palsy Awareness Day!  We have all had a busy month trying to educate our friends, family and the public about what they can do to increase awareness and improve wellness for people with CP.  We have tried to make the most of the month here at the CP Research Network including:

Join in the fun.  Post a pic of you or your family in green on Instagram or update your cover page with one of our banners on Facebook. Tag us to be entered into our drawing.