A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.

Dr. Joyce Trost Hired As Director of CP Registries

A woman smiling broadly with long blond hair, dark round glasses and a multi-color blouse.The Cerebral Palsy Research Network hired Joyce Trost, PT, PhD into the role of Registries Director. Dr. Trost has 32 years of clinical, research and administration experience with an expertise in gait and motion analysis serving as the Director of Research for 15 years at Gillette Children’s. She will be responsible for managing the growth, quality and research output of the CP Research Network’s two cerebral palsy registries. Our clinical registry captures data about patients seen at CP Research Network clinical sites and our community registry captures data about the lived experience with CP outside of a hospital setting. Dr. Trost started with the network on August 21, 2023.

“We are honored to have attracted such a talented and experienced CP researcher to our team,” said Paul Gross, President and CEO of the CP Research Network. “Dr. Trost brings a depth of additional skills to the role that we envisioned for our registries that will further strengthen our network.”

Dr. Trost began her career as a physical therapist and eventually went on to get a PhD in Rehabilitation Science. As the Director of Research at Gillette, she established, directed, and drove the strategy for Pain, Spine, Orthopedics, Rehabilitation, Neuroscience, Motion Analysis, and Health Services Research programs led by MD/PhD dyads. She developed a portfolio of funding that included industry, grant and philanthropy, cultivated relationships with many different collaborators, and prioritized scientific rigor and systematic data collection processes.
In conjunction with team members, helped design Gillette’s Center for Gait and Motion Analysis database, built Sponsored Project Administration, and revolutionized the organization’s research governance, compliance, and study start-up process while shaping the organization into a research leader in cerebral palsy and pediatric rare diseases.

A passion of hers is involving those with lived experience in the research process. Her interest in physical therapy and exercise’s impact on muscle was sparked as a pre-teen when she had a life altering figure skating accident. Her ongoing research interests are in early intervention and outcomes of exercise and interventions on muscle and function for those with cerebral palsy. In her personal life, she is married, the mom to 4 young adults, and spends free time working on their farm, fishing or out on bike trails with her family.

The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Chicago Bound — AACPDM Annual Meeting

Clinicians and researchers who direct their work toward improving care for individuals with cerebral palsy (CP) will gather in Chicago, Illinois next week for the meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The CP Research Network will have a significant presence and will demonstrate its growing impact on the field of CP care through two mini-symposia, one morning session, four free paper presentations and three scientific posters. Network leadership will also be hosting an informational session on the evening of September 11th where clinicians and researchers interested in joining or learning more about how to engage with the CP Research Network.

CP Research Network CEO Paul Gross with facilitate two discussions (mini-symposia) about how the resources from the collaborative network can advance discovery. The first will focus on understanding national and international varied approaches to surgical decision making for selective dorsal rhizotomy (SDR) which may be affecting outcomes. The panel which includes several CP Research Network investigators, Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS will share data collected at several large tertiary care centers and reflect on the variations in SDR practice across the centers.

The second symposia led by Paul Gross and including network investigator Michael Kruer, MD will highlight how leveraging rich data sets like the one being built through the CP Research Network can accelerate discovery as well as bring along a new generation of young investigators. They will discuss our community and clinical registries, the sources of data available to researchers, and the practical realities of comparing and linking the data to generate new knowledge. They will also touch on how these large data sets have opened opportunities for a new generation of young researchers who are now presenting papers and posters at the meeting including Elizabeth Boyer, PhD, Cristina Sarmiento, MD, Brandon Rocque, MD, Sruthi Thomas, MD, PhD, Shannon Strader, DO, MS, and Bhooma Aravamuthan, MD, DPhil. The morning seminar presentation entitled, Accessing the CP Research Network Registries for Community Research and Secondary Analyses will complement the symposia and will feature Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque. At this seminar, researchers will learn how to apply to access data generated by the CP Research Network and the types and quantity of data available in both the clinical and community registries.

Free papers and posters that can only be accomplished through the power of multi-center studies are being presented including: SDR practice variation analysis by Brandon Rocque, MD, MS, Botulinum toxin practice variation in North America by Sruthi Thomas, MD, PhD, and Multi-center improvement in dystonia detection in people with CP by >Bhooma Aravamuthan, MD, DPhil. By by providing an infrastructure for these multi-centered, rich data analyses the CP Research Network will speed up research discovery and impact clinical care in the near future.

Our community registry is fosters unique research that includes the patient’s voice through self reported experience. It has also given several young researchers the opportunity to grow their careers including: Consequences of Falls by Elizabeth Boyer, PhD, Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Impact of Gross Motor Function and Age on Functional Decline by Cristina Sarmiento, MD, Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Chronic Pain Findings, Cristina Sarmiento, MD, and CP Sensory study by Bhooma Aravamuthan, MD, DPhil. The opportunity to gain the lived experience voice with many individuals with CP is a true value to investigators who do not otherwise have the vast connections of the CP Research Network.

The informational session is an open house style opportunity for individuals unfamiliar with the CP Research Network who want to ask questions about how the learning health network can be leveraged for research and improving quality care of people with CP. There will be opportunity to interact with CP Research Network leadership including Paul Gross, Founder and CEO, Michele Shusterman, Founder and Education Director, Kristie Bjornson, PT, PhD, Scientific Director,and Joyce Trost, PT PhD the new Registries Director. Several site investigators will be there as well including Sruthi Thomas, MD, PhD of Texas Children’s Hospital and Brandon Rocque, MD, MS from Children’s Alabama. You can learn more about what makes the CP Research Network unique, the benefits of membership, and about the full-service data coordinating center which includes statistical support for network related projects. You can ask about membership fees and how they support enhanced knowledge sharing, quality of care projects for benchmarking, collaborative research and professional development with your peers.

We look forward to connecting with you in Chicago!

Make a Difference: Join Our STEPtember Fundraising Team

A blue tile with exercise icons in the background and text to emphasize there are more than 80 ways to move.We invite you to join us to make a difference in cerebral palsy (CP) by helping to raise funds for CP research through STEPtember. STEPtember is an activity-based peer-to-peer fundraiser that happens throughout the month of September. Donations support us through our strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) as they are the leading private funder of CP research in the United States. Participating in STEPtember has multiple benefits:

  • You will advance research for CP,
  • You will raise awareness about CP,
  • You will stay active and be able track your progress.*

We have created a CP Research Network team for STEPtember. You may join our team as an individual or form your own team under the CP Research Network team (you will see these options on our join page). STEPtember comes with an iPhone app to help you monitor and share your activity on social media or with other team members. And while the name includes “step”, you get step credit for any activity including biking, rolling, swimming and lots of other forms of activity and exercise. It’s a great way to enhance your fitness and have challenging fun with friends, family and co-workers.

Registration is now open. Build your team in August and get ready to get more active and start fundraising in September. Get recognized with shirts and jackets for your fundraising achievements! Please join us and help make a difference in CP research!

* We really want to emphasize that even though the name is “STEPtember”, we support more than 80 ways to stay active and transform it into step equivalents to make the opportunity available to people of all abilities.

Dr. Julie Stutzbach smiles with shoulder length brown hair, a dark blazer and a bright red blouse.

Webinar: Adults with Cerebral Palsy and Low Back Pain

A woman with shoulder length brown hair smiles with a brown jack and red shirt.

Dr. Stutzbach will explain the goals of her study of low back pain in adults with cerebral palsy.

The Cerebral Palsy Research Network has initiated a new study to examine the effects of low back pain on quality of life for adults with cerebral palsy (CP). Julie Stutzbach, PT, DPT, PhD, (link) a clinician scientist with extensive experience in neurorehabilitation, clinical trials and qualitative research will present her new study concept to members of the CP community on Wednesday, July 19 at 8 pm ET during our monthly MyCP Webinar Series.

Chronic low back pain is a common problem in adults with CP. It leads to increasing disability and functional decline. Improving pain management strategies is critical to improving quality of life as people with CP age. However, participants’ perspectives on living with low back pain have not been thoroughly examined. This webinar will cover a new study proposal that will use interviews combined with survey data from the adult study in our Community Registry to explore how pain interferes with daily function as well as how adults with CP experience accessing treatment for low back pain.
This study builds on the CP Research Network’s research partnership program that enables investigators outside of the network to conduct studies-based network based on our prior work and research tools. Dr. Stutzbach has partnered with Mary Gannotti, PT, PhD who the principal investigator for the CP Research Network Adult Wellbeing and Pain studies that are available through our Community Registry. Drs Gannotti and Stutzbach will use the Community Registry to enroll participants that have taken our adult pain survey and identified low back pain as an issue in their lives. This new study has been approved by the Regis University Institutional Review Board where Dr. Stutzbach conducts her research.

Community members interested in this MyCP webinar must register. Dr. Stutzbach will be available for Q&A directly following the presentation. A recording of the presentation and discussion will be posted on our website and our YouTube channel within 24 hours.

Low Back Pain in Adults with CP

Accelerating our mission with new board members

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.

A small breakout group of clinicians gathers around a table to advance CP research

Inside the CP Research Network Annual meeting

Clinicians sit classroom style for a keynote lecture in front of a large screen.

The keynote on “Efficiences in Clinical Trial Design” was delivered by Dr. Stephen Wisniewski.

Earlier this month, the Cerebral Palsy Research Network held its annual investigators’ meeting in Wilmington, Delaware. It was graciously hosted by AI duPont/Nemours Children’s Hospital. This annual face-to-face meeting is critical to advancing our Research CP agenda, connecting investigators with community members and funders, and re-energizing our research community to answer the questions that our community values most. This month’s MyCP webinar will be on Tuesday, May 30, at 8 pm ET and share an inside view of our annual meeting from the perspective of community participants.

Community members Jocelyn Cohen, Gina Rolle, and Nina Miller all attended the annual meeting and will participate in the webinar to share their perspectives on the meeting and the work of the network. At the wrap up, Ms. Cohen expressed her feelings about the meeting to us. “I want all the clinicians here to know that I’m grateful for the work you’re doing, for your openness toward collaboration, and for your willingness to have these conversations, said Ms. Cohen. “I’m excited to connect with you professionally and personally.” Ms. Cohen attended the meeting in a dual role as she is both an adult with CP and the Vice President of Communications and Engagement with our strategic partner Cerebral Palsy Alliance Research Foundation.

Paul Gross, President, CEO and Co-founder of the CP Research Network will give an overview of the meeting and how the agenda relates to the network’s strategic plan. Mr. Gross will be followed by Kristie Bjornson, PT, PhD, the Scientific Director, who will give an overview of the registry and the research discussed at the meeting. Our panel of participants will then share their experiences and learning from the meeting.

The annual meeting had 50 attendees in total including researchers from every discipline that treats people with CP including developmental pediatrics, gastroenterology, internal medicine, neurology, neurosurgery, occupational therapy, pediatrics, physical medicine and rehabilitation, and physical therapy. Research funders in attendance included a representative from the National Institutes of Health, the CP Foundation, Cerebral Palsy Alliance Research Foundation and United Cerebral Palsy. Attendees participated in general sessions about our registries and efficiencies in clinical trial design as well as numerous small group working sessions on topics including adult care, complex CP, dystonia treatments, genetics, grip strength, imaging, nutrition and growth, selective dorsal rhizotomy, and surgical decision making. The social highlight of the meeting was dinner hosted by Dr. Wade Shrader and his wife Carol at their lovely home in Wilmington.

Next Wednesday’s webinar will be unique in our series as it brings our research efforts to the community through the eyes of fellow community members. Please join us by registering in advance. Webinar Series subscribers will receive a link to the webinar in email prior to the event. As usual, the webinar will be recorded and posted to our YouTube channel within 24 hours of its airing.

Blurred lights and pathway going around a curve to convey the speed of acceleration.

Accelerator Award: Partnership Strengthens CP Research

The CP Research Network and CPARF logos side by side to indicate our new strategic partnership.The Cerebral Palsy Research Network announces a new research award opportunity called “Accelerator Awards” made possible through the network’s partnership with the Cerebral Palsy Alliance Research Foundation (CPARF). Accelerator awards are up to $25,000 and are meant to rapidly advance research in the network. These awards will be made to investigators in the CP Research Network who put forth new study proposals and registry analyses that enhance the generation of new knowledge for the care and treatment of people with CP. The award process will be managed by Dr. Kristie Bjornson, the network’s Scientific Director who has a long track record in research funded by the National Institutes of Health (NIH).

“We reviewed all the funding mechanisms available to CP focused investigators and established a process that will really streamline the timeline for decision making and investigator feedback,” said Dr. Bjornson. “This award mechanism is a significant milestone for the CP Research Network because it provides the necessary funding to leverage our CP Registries for large public grant applications to answer key questions developed by the community of persons with CP. It is intended to secure time and resources that might not otherwise be available.”

The Accelerator Awards extend additional benefits to sites and investigators that join the CP Research Network. The network offers professional development opportunities, collaborative research partnerships, participation in quality improvement initiatives, implementation of care pathways and powerful research infrastructure hosted at its Data Coordinating Center at the University of Pittsburgh. Nonmembers can learn how to join the network or partner with existing members from our webinar on this topic.

The CP Research Network began taking applications from its site investigators as of May 1, 2023. Grant applications may be submitted on a rolling basis and may be approved in as little four weeks. This rollout aligns well with our annual investigators’ meeting at Nemours/AI duPont earlier this month, where 50 people, including network site investigators, community members, an NIH program officer, and members of leading advocacy groups, gathered to advance study concepts being developed within the network.

The American Academy for Cerebral Palsy and Develomental Medicine program cover for its 2023 annual meeting

Our Impact Grows: Sharing Our Findings

The program cover the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine features skyline view of Chicago.

CP Research Network investigators will share our latest findings from our research and quality improvement at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine in Chicago this fall.

Providers, families and researchers for children with cerebral palsy (CP) will meet in Chicago, Illinois on September 10-13th for the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) annual meeting. This in-person meeting will bring together participants from around the world. The CP Research Network will demonstrate is growing impact on the field of CP care and research by sharing its findings in two mini-symposia, one morning session, four free paper presentations and three scientific posters. All these efforts are aimed at improving outcomes for people with CP through the implementation of evidence-based information and practices. We are thrilled to have the opportunity to share the results of our research, and to provide information about how the CP Research Network can be a catalyst for CP research.

The mini symposia will be two hours in total length including discussion.
Topics include:

  • Common Data Models and Research Data Sources: The practical realities of leveraging rich data sets to accelerate discovery – A multi-disciplinary team of presenters will be led by the CP Research Network CEO Paul Gross and include Michael Kruer, MD. They will discuss the sources of data available to researchers, the mechanism to access them and the practical realities of comparing and linking the data to generate new knowledge. The symposium will include speakers with real-world experience leveraging and linking these types of disparate but related data sources. It is appropriate for researchers focused on clinical and translational research.
  • Understanding the rationale behind practice variation in selective dorsal rhizotomy (SDR) moderated by Paul Gross, includes presenters from the disciplines that participate in SDR decision making including several CP Research Network investigators including Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS. The panel will discuss varied approaches to surgical decision making for SDR including overviews of national and international practice variation. They will discuss criteria involved in surgical spasticity decision making for SDR across several large tertiary care centers.

The morning seminar presentation is:

  • Accessing the CP Research Network Registries  for Community Research and Secondary Analyses featuring speakers Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque, MD, MS.  These speakers will discuss how researchers can access the data generated by the CP Research Network registries to perform secondary analyses that generate new knowledge about CP from existing data collection.  The speakers will cover the process for applying to access data and the types and quantity of data available in both the clinical and community registries.

Free papers and scientific posters feature a single investigator presenting findings based on research generated from our network. Free papers are eight minute oral presentations given to attendees and posters are displayed a specific times during the conference in which investigators are available to explain their research findings one on one with interested attendees.  In this format, topics and investigators include:

Free papers:

Scientific Posters:

These symposia, morning seminars, scientific posters and free papers all focus on improving care and advance research on the international stage. The broad reach the network’s work is clearly visible at this annual meeting and will attract new clinician researchers into our circle, with potential to widen our eventually impact.

Dr. Jeffrey Leonard, chief of pediatric neurosurgery, with a white lab coat, blue shirt and tie.

Selective Dorsal Rhizotomy in the Real World

Dr. Leonard is a pediatric neurosurgeon who leads the network study of selective dorsal rhizotomy (SDR).

The Cerebral Palsy Research Network’s MyCP webinar for April will feature Jeffrey Leonard, MD, Chief of Neurosurgery at Nationwide Children’s Hospital, talking about selective dorsal rhizotomy (SDR) – a surgical procedure to reduce spasticity for people with cerebral palsy (CP). Dr. Leonard, neurosurgery lead for the CP Research Network, will discuss the “who, what, how, when and why” of SDR including the current gaps in knowledge about the procedure and the network’s planned study to address these gaps. At the conclusion of the presentation which begins on Wednesday, April 19 at 8 pm ET, Dr. Leonard will be available for an open Q&A with members of the CP community.

“The question of who is the best candidate for SDR was the founding question of the network,” said CP Research Network President, CEO and Co-founder Paul Gross. “Being presented with this surgery as an option to help my son’s gait inspired me to seek real world comparative effectiveness evidence about SDR versus other interventions that were offered us at the same time. Dr. Leonard’s experience and passion for designing a study to address these gaps in knowledge aligns with our established patient-center research agenda (Research CP).”

Later this year, Dr. Leonard and other leading researchers in the CP Research Network are planning to submit a grant application to the National Institutes of Health for a 20-center study to generate answers to this question. He will describe the procedure and the extent of variation in practice across the United States as well as how the study will be designed to generate evidence about the effectiveness of SDR.

Please join us for the webinar and discussion next Wednesday evening. You can register for this webinar or the whole MyCP webinar series to receive notices every monthly webinar on our research. The webinar will also be recorded and posted to our YouTube channel.

A woman in a maroon graduation cap and gown and a gold sash sits in her wheelchair.

Winners! Cerebral Palsy Awareness Day 2023

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 three categories that we thought were important to represent our community: kids, teen & young adults, and adults over 25. Each of the following submissions were selected by being the top three photos in these categories in votes out of 13,383 counted:

First Prize Winners ($100 each) [Adults | Kids | Teens and Young Adults]

A woman with black hair and red and white striped sweater looks surprised as her boyfriend proposes

He Put A Ring On It!:
We got engaged after dating for three and a half years! I was completely taken by surprise.

Neighbourhood Stroll With Daddy:
Lyndon has moderate spastic quadriplegic CP and epilepsy. He uses a walking belt for safety measures as he can have a drop seizure at any time. He loves getting outside and walking!

A young adult sits in her wheelchair wearing a purple wig with a bright pink feather boa next to Halloween decorations.

Halloween Fun:
One day each year it’s fun to dress up in a fun bright outfit and sing out loud!

Second Prize Winners ($50 each) [Adults | Kids | Teens and Young Adults]

A woman in a bright orange shirt with glasses and long blond e hair smiles in her power wheelchair

Playing Power Soccer:
Proud to be a part of the Overdrive Power Soccer team!
Photo credit: Mary Free Bed Rehabilitation Hospital

A child with her hair drawn back in high pony tail paints green on a CP support ribbon.

Cerebral Palsy Support Painting:
Ava is a happy, driven 3 year old with spastic hemiplegia CP. In this photo she is sporting her favorite “Cerebral Palsy Warriors are Magical” t-shirt while painting a CP support ribbon.

A teen girl rides an all terrain track chair across a rocky trail.

Adventure Is Out There!!:
Brianna is always up for an adventure, especially when it involves an Action Trackchair!!

Third Prize Winners ($25 each) [Adults | Kids | Teens and Young Adults]

A woman with a light blue and red helmet gets strapped into an adaptive sled by guides.

Adaptive Snow Skiing
Loving the feel of the cold air as she goes skiing down the slope, feeling free!

A young boy smiles in a navy blue top with red and white stripes while sitting in front of an electric keyboard.

Gabriel Loves Making Music On His Keyboard:
When Gabriel is in his stander, he loves playing music on his keyboard.

A teen is strapped into an adaptive ski by instructors with a German Shepherd in the foreground.

This Is My Cerebral Palsy:
My name is Kaelyn and I have been shredding down the mountain for the past four years. Adapted Recreation has been a game changer for me (and my family) and of course, Shadow my service dog.

Congratulations to each of these photographers and subjects for their selection and their prizes of $100 for 1st place, $50 for 2nd place and $25 for 3rd place.

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 winner is:

A young woman in a maroon cap and gown with gold sash smiles while sitting in her wheelchair.

Graduation
I mastered it!

Congratulations to Karyn for the photo in her graduation cap and gown and for the $500 prize!

Thank you to EVERYONE that participated – submissions, shares and votes. We hope the sharing of pictures and our awareness banners helped you all create awareness for CP and celebrate our vibrant community! Wear your green proudly today!