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!

Accelerating our mission with new board members

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The Cerebral Palsy Research Network is all about bringing together people from across the patient, family, medical and research communities to create connections that lead to shared understanding and improved wellbeing for people with CP. It’s why “network” is in our name.

As a network, people are at the heart of what we do, and that’s especially true when it comes to the strategic guidance and expertise provided by our board.

Over the past few months, we’re delighted to have grown our board to welcome three new members:Garey Noritz, MD., David Browdy, BS, MBA, and Michael Pearlmutter, BS, MBA.

Though Dr. Noritz is new to the board, he’s a familiar face here at the CP Research Network as one of the founding members of our network steering committee.

As an internist and pediatrician specializing in neurodevelopmental disabilities and Chair of the Council on Children with Disabilities (COCWD), he brings vital medical expertise to the most strategic level of our organization. He is also the Principal Investigator of our clinical CP registry which now hold important medical information on approximately 7,500 patients with CP and accelerates our research.

Passionate about making sure that no child with a disability is overlooked and a longtime advocate for inclusivity and advocacy, we know his perspective and guidance will help us achieve our important mission.

He’s joined by David Browdy, BS, MBA. Mr. Browdy is a highly experienced business leader and the current Vice President and CFO of the Fred Hutch Cancer Center.

The former CFO of Utah Health, Mr. Browdy’s interests and expertise lie in finding that difficult balance between the business models behind healthcare systems and the potential of scientific and medical advances.

His impressive track record of building successful nonprofit research programs will be a real asset to the CP Research Network’s board as our continued quality improvement efforts mean we need to carefully consider the value chain of hospital care.

Also joining the board in April was Michael Pearlmutter. The current Executive Director of  Cerebral Palsy Alliance Research Foundation (CPARF), Mr Pearlmutter has extensive experience leading nonprofit organizations and strategic research funding from his experience at the Partnership for Clean Competition Research Collaborative.

Mr Pearlmutter’s place on the board will be a valuable way to strengthen the growing alliance between CPARF and the CP Research Network following our strategic partnership which we announced in February.

CPARF’s focus on closing critical research gaps combined with our reach as the largest network of hospitals and community members focused on improving health outcomes for those with CP, will allow us to implement larger scale changes more quickly, making a real difference to the lives of those with cerebral palsy and their families.

A very warm welcome to Dr Noritz, Mr Browdy and Mr Pearlmutter. We look forward to seeing how their time and insights will help us drive forward important new initiatives, continue to build our network, and deliver real change.

As well as our board, there are many important ways to get involved with our network and support the vital work we do.

Participate in discussions, take part in current research, access free resources and personalized recommendations through MyCP or support our work with much-needed donations to help us continue improving the lives of those with CP.

Cerebral Palsy Awareness Photo Contest announcement: examples pictures from last year's contestants are shown

Cerebral Palsy Awareness Photo Contest 2023

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

Last year’s Best Overall winner: Dawn McKeag: Slam dunk!

In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network is introducing the second annual Cerebral Palsy Awareness Photo Contest to highlight the lives and experiences of community members living with CP. The contest invites members of the community to submit up to five photos photos that depict their day-to-day life, adventures, challenges, joys, and journey. The CP Research Network has opened its gallery for submissions and will award $1,000 in total cash prizes to 10 winners on March 25, 2023 – the day officially designated as National CP Awareness Day in the United States.

“We started this initiative last year to fill in gaps in authentic photography for people with CP and to create awareness” said Paul Gross, President and CEO of the CP Research Network. “The community was abuzz with the opportunity to share candid pics of their lives with CP.” The CP Awareness Photo Contest seeks to celebrate the lives of people with CP in a way that can be used in the CP Research Network’s variety of education, awareness and wellbeing programs!

The CP Awareness Photo Contest is opens today on CPRN.ORG. Contestants must be members of MyCP and may participate as an advocate, clinician, researcher or community member. Prizes will be awarded as follows:

Category 1st Prize 2nd Prize 3rd Prize
Children (under 13 years of age) $100 $50 $25
Teens and young adults (13 to 25 years of age) $100 $50 $25
Adults (25+ years of age) $100 $50 $25
Best Overall $500


Winners will be chosen via a combination of votes and final selection by the CP Research Network. Contestants must sign a photo release as part of the entry process. Photos will be displayed on CPRN.ORG and CP Research Network social media channels. Detailed rules for entries can be found on the photo contest rules page. Dig through your archives or snap a new picture and submit it soon!
The CP Research Network and CPARF logos side by side to indicate our new strategic partnership.

CP Research Network Announces Strategic Partnership with CPARF

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CPARF Executive Director Michael Pearlmutter and CP Research Network CEO Paul Gross pose in navy blazers with light blue shirts smiling broadly.

CPARF Executive Director Michael Pearlmutter joined CP Research Network CEO Paul Gross for a photo following a speech Gross gave at Columbia University in November 2022.

The Cerebral Palsy Research Network announced a strategic partnership with the CP Alliance Research Foundation (CPARF) to accelerate research, improve outcomes and expand educational efforts for the CP community. The CP Research Network will collaborate with CPARF to raise funds for CP research and CPARF will support the existing research efforts underway within the network. CPARF will also promote our toolkits and webinar series to members of its community. The partnership is effective immediately.

“We are excited to formalize this strategic partnership with our colleagues at CPARF with whom we have been working closely for several years,” said CP Research Network President and CEO Paul Gross. “This strategic partnership will help the CP Research Network engage more community members in research such as our adult study of wellbeing and pain, and expand the reach of our educational toolkits.”

The partnership will provide the CP Research Network with dedicated funds to support new studies that are aligned with the convergence of our research priorities with CPARF. CPARF scientific advisor, Dr. Yvonne Wu, a pediatric neurologist and epidemiologist from University of California San Francisco, will join the CP Research Network Steering Committee which oversees the network’s research initiatives. The two organizations will include one another in their events and research operations.

Researchers and community members wanting to learn more about the partnership can register to join Paul Gross and CPARF Executive Director Michael Pearlmutter for a webinar on Monday, February 13 at 6 pm ET. The webinar will also be recorded for viewing after the webinar.

Cerebral Palsy Research Network CEO Paul Gross smiling.

CEO Paul Gross Speaks at CP ADAPT Summit

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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

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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

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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

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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

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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

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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

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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.