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!

Cerebral Palsy Research Network CEO Paul Gross smiling.

CEO Paul Gross Speaks at CP ADAPT Summit

CEO Paul Gross wearing a dark blue overshirt with a grey scarf gesticulates while speaking at CP ADAPT

CP Research Network CEO Paul Gross speaking to the 40 clinicians and researchers at the CP ADAPT Summit hosted at the Elsass Foundation in Copenhagen about his experiences building research networks.

The Cerebral Palsy Research Network CEO, Paul Gross, spoke this week at an international summit focused on planning an adaptive trials network for cerebral palsy (CP). Adaptive trials are studies that use unique statistical methodologies to conduct clinical trials that can dynamically change as information is learned from the ongoing trial. Adaptive designs have the potential to test multiple interventions at once which can, in turn, increase the speed of drug or device trials. CP ADAPT is a new international research network in the early planning phase. Mr. Gross has co-founded four research networks over the past 16 years and will be speaking about his key learnings from that experience.

“We are excited to hear Paul’s perspective as both a parent of a child with CP and as a co-founder of numerous research networks,” said Iona Novak, PhD, of the CP Alliance Research Institute in Australia. “We have a long-time collaborative relationship and look forward to planning this new network together.”

Hosted and sponsored by the Elsass Foundation in Copenhagen, Denmark, the summit was organized by leaders in the CP research field including the CP Alliance’s Iona Novak, PhD, Université Libre de Bruxelles’ Bernard Dan, MD, Monash University’s Michael Fahey, MD and University of Copenhagen’s Jens Bo Nielsen, PhD (who also heads Research at the Elsass Foundation). Dr. Novak is received a grant from the CP Alliance to plan the adaptive trials network. Mr. Gross is a Co-Investigator on the grant. While participating as a community advocate, the potential to connect the CP Research Network to CP-ADAPT holds significant potential for more rapidly improving treatments in CP.

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.

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.

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.

A cartoon depicts people running and a man rolling quickly in a wheelchair to reach 60 miles for cerebral palsy

60 Mile Challenge for CP Research

A young girl in a brown knit hat takes steps in her walker.

Join us for the 60 Mile Challenge for CP

Join us this May in rallying support for the cerebral palsy (CP) community and our research work at the CP Research Network with the 60 Mile Challenge for CP Research! This peer-to-peer fundraiser is a great way to raise awareness for CP and provide a way for your friends and family to improve the lives of people with CP by raising money for our national research efforts. You can join the challenge on Facebook and raise money there or, if your are not active on Facebook, on our 60 Mile Challenge event website. And you can clock your miles any way you see fit – Fitbit, wheelchair odometer, Strava, phone app, whatever works for you and how you move! You can create a team, do it solo or just support someone else that is doing it. Share your progress on Facebook to get support for your efforts!

 

A young woman with cerebral palsy in a hat and shorts using arm crutches leans on a tree during a hike.

You can go solo or start a team or just support someone else who is doing the 60 Mile Challenge!

The 60 Mile Challenge for CP Research is the first in a series of peer-to-peer fundraising activities that we will conduct this year. Our goal is to raise funds to support our expanding research agenda to answer critical questions in the care of children and adults with CP. The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the US to gather robust and comprehensive data for research. We focus our research and consumer educational content on the health and wellness outcomes that people with cerebral palsy value most.

Please join us this May for the 60 Mile Challenge for CP Research!

Dr. Aravamuthan, a doctor specializing in cerebral palsy, with dark hair back over her white lab coast smiling.

New Publication on Cerebral Palsy

Bhooma Aravamuthan, M.D., DPhil. A smiling woman with long dark hair is wearing black rimmed glasses and a white lab coat.

Dr. Aravamuthan has championed physicians sharing an etiologic diagnosis with a diagnosis of cerebral palsy.

The Cerebral Palsy (CP) Research Network congratulates investigator Bhooma Aravamuthan, MD, DPhil and her co-authors for the publication of her CP Research Network study entitled “Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.” The publication, released in the journal Developmental Medicine and Child Neurology in January 2022, describes the results of her survey of community members about the importance of understanding their possible etiologies (origins) of CP. The results of the study indicate that most community members with a diagnostic preference would want to know both their CP diagnosis and any information about their potential etiologic diagnoses.

Dr. Aravamuthan has been a strong advocate for shifting the practice of clinicians that make a CP diagnosis to include information that is important to families for numerous reasons. This article concludes that physicians should change practice to include all information about etiologic diagnoses with their CP diagnosis. This may include, in some situations, stating that the etiologies of a person’s CP are not known.

“Based on survey work we have done with clinicians, many tend to provide either a diagnosis of CP, or a diagnosis describing the etiology of CP, but not both,” said Dr. Aravamuthan, a pediatric movement disorders neurologist as Washington University in St. Louis. “But this study shows that families value the services and the sense of community of having both diagnoses when available.”

The red cover of Developmental Medicine and Children Neurology journal

The full journal article is available to subscribers to DMCN. MyCP members can click on the journal cover to go to the page to view the pre-approved version of the article.

We have made the article in its pre-approved state available to members of the MyCP community. As with many academic publications, this article is not available for free for the general public but the journal allows for authors to post pre-approved versions. MyCP members can find the article in our CPRN Private Archive. Interested community members can join MyCP for free to access this article and other services such as personalized resource recommendations and free adaptive fitness programs.

Cerebral Palsy Photo Contest Winning pictures

Cerebral Palsy Awareness Day 2022

Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our inaugural CP Awareness Month photo contest. In February, we began accepting submissions in five categories: creativity, diversity, participation & inclusion, perseverance, and physical activity. Each of the following submissions were selected by leading these categories in votes out of 13,383 counted:

A young girl with cerebral palsy smiles while holding the bottom of her dress above an incoming ocean tide.

Creativity Winner: Michelle Toy: Live every day like Mighty Mara!

A young boy with cerebral palsy uses his gait trainer with determination and glee

Diversity winner: Reena De Asis: Determined to thrive as he reaches out to you and lights up the room. The flames on this joyous toddler’s gait trainer are a reminder that he’s a CP warrior on fire!

A proud young woman with CP, seated in a wheelchair and wearing a blue-and-gold graduation cap and gown, receives her diploma.

Participation & Inclusion winner: Jersey Morrison: Jersey’s Graduation in 2021

A man in a wheelchair with cerebral palsy sits between hospital administrators receiving his fundraising check for $10,000.

Perseverance winner: Gary Lynn: “I have not ever let Cerebral Palsy stop me or define who I am!”

A young boy with hemiplegic cerebral palsy jumps for joy as he heads for a puddle of rain water

Physical Activity Winner: Sarah Board: Jumping for joy despite my hemiplegia!

Congratulations to each of these photographers and subjects for their selection and their prize of $100.

In addition to these winners, the staff and volunteers of the CP Research Network voted for best overall photograph in terms of what represented the CP Research Network’s values, the categories and our focus on wellbeing. The winner is:

An adaptive basketball coach in a wheelchair lifts a boy with cerebral palsy overhead in his own chair to dunk a basketball

Best Overall winner: Dawn McKeag: Slam dunk!

Congratulations to Dawn McKeag for the photo of her son Fin and the coaches their local Y for adaptive basketball and the $500 prize!

In addition to this winner, our team wanted to recognize two pictures for honorable mention:

The Shrader triplets, two of whom have cerebral palsy, at graduation

Best photo honorable mention: Carol Shrader: Triplet selfie at Benjamin’s graduation from Belhaven University!

A young man with cerebral palsy in a wheelchair focuses intensely as he aims down his drawn arrow preparing to release it

Honorable Mention: Wesley Magee-Saxton: My 22 year old son, who has CP,  has been perfecting his archery technique with a bow that his dad modified for him. He spent hours practicing and can now almost always hit the target.

Thank you to EVERYONE who participated – submissions, shares and votes. We hope that by sharing pictures and our awareness banners we helped you create awareness for CP and celebrate our vibrant community! Our board will continue to match donations this month 2:1! Wear your green proudly today!

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.

CP Awareness Month Begins

CP Awareness Month Begins!

A young woman with cerebral palsy leans on a tree while hiking.

Come back every day to vote for YOUR favorite pictures.

Join the Cerebral Palsy (CP) Research Network in our activities to celebrate National CP Awareness month. This recognized month is a great opportunity for us to create awareness about living with CP for the general public to help fund research, support disability policies, and to promote inclusion. There is so much you can do to help the community:

  1. In February, we gathered photos for our CP Awareness photo contest. You can vote for the best picture in each of five categories on our website. We will be awarding a total of $1,000 in cash prizes to the winners on national CP Awareness Day – March 25! Go vote for your favorites – and share them on social media to get more votes.
  2. We have CP facts as Facebook banners that you can download and use to spread the word. We will be posting a CP fact every day on our Facebook and Instagram – feel free to share those!
  3. You can buy CP Research Network merchandise at our Bonfire store and wear green through the month! A portion of the proceeds is donated to our work!
  4. You can donate or start a Facebook fundraiser – our board with 2X match the donations you give or raise throughout the month of March!

Please help us in our efforts to spread awareness for cerebral palsy!