Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

Award: Study of Pain in Adults with Cerebral Palsy

Headshots of two women with shoulder length brown hair and glasses smiling broadly.

Cerebral Palsy Research Network leaders Drs Bailes and Gannotti will lead a study of adult pain classification funded by CPARF.

The Cerebral Palsy Research Network has been awarded funds for a three-year study in the classification of pain for adults with cerebral palsy (CP). This study was the subject of October’s MyCP webinar. Classification of pain in adults is fundamental to identifying proper treatments and improving outcomes. Congratulations to co-principal investigators Amy Bailes, PT, PhD and Mary Gannotti, PT, PhD who will lead the team which includes the rest of the members of the Adult Care Quality Improvement.

The CP Research Network applied to Cerebral Palsy Alliance Research Foundation (CPARF) for this award earlier this year. CPARF’s research funding was a very competitive cycle this year and we are honored to receive this funding to advance our essential study of pain in adults with CP. We expect that this work will have a very broad impact on adult care by beginning to address pain, one of the most important issues identified through our Research CP program — our community created research agenda.

The study team comprises clinician investigators from Columbia University, Nationwide Children’s Hospital which has an adult outpatient clinic, University of Michigan, and the University of Colorado. This team has already demonstrated that it can improve the care of adults across multiple centers with its Adult Care QI initiative. This effort led to a substantial increase in the assessment of pain across participating CP Research Network centers from 24% of the time to over 90% percent of visits. Now the group is planning the next important step in the systematic treatment of pain – classifying it accurately as a critical step to effective treatment. The study will begin with a Delphi process to identify the best tools to classify pain during a clinical visit. The appropriate classification of an individual’s pain will enable clinicians to choose the most appropriate treatments.

We look forward to the successful execution of this grant and transforming how pain is treated in adults. People interested in the background for the study can watch October’s MyCP webinar with the study team. Adults wanting to participate in our research should either join MyCP to regularly contribute your lived experience to our research or take our initial adult study of wellbeing and pain.

A banner about nutrition in cerebral palsy features a colorful bowl of vegetables and legumes.

Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing

A balding man with dark rimmed glasses smiles broadly in a white lab coat with a colorful striped tie.

Dr. Richard Stevenson, a developmental pediatrician at UVA, will present on the role of nutrition in health of children with cerebral palsy.

The Cerebral Palsy Research Network is excited to announce its November MyCP webinar entitled “Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing” with Dr. Richard Stevenson, Developmental Pediatrician and Division Head – Neurodevelopmental and Behavioral Pediatrics at the University of Virginia Health. The webinar will take place on Tuesday, November 14, at 8 pm ET. Dr. Stevenson has been leading efforts in the network to investigate the role of nutrition in overall growth and health for children with cerebral palsy (CP).

Growth is considered an integral indicator of nutrition, health, and wellbeing in children. The regular measurement of growth and comparison to reference data is a key component of health maintenance in children across the globe. In general, if a child is growing well compared to their peers, then they are considered to be disease free, adequately nourished, and living in a safe and “good enough” environment. Children with cerebral palsy are smaller in stature compared to their peers and in proportion to the severity of their motor impairment. But this raises many questions:

  • Is this growth pattern a problem that is modifiable?
  • Is the difference in growth due to poor nutrition, due to medical co-morbidities, due to poor activity levels or other factors that can be manipulated?
  • Does this difference in growth for children with CP matter?
  • Is it associated with poor health or with differences in quality of life?

A part of the overall differences in growth in people with cerebral palsy is the manner of growth and maturation of bone and muscle, and that bone and muscle problems (e.g. spasticity, contracture and osteoporosis) contribute to chronic pain and decreased mobility over the lifespan. Could these long-term problems be mitigated through childhood management of diet and physical activity?

Dr. Stevenson will review current knowledge on growth and nutrition and the relationships among growth, health, physical activity, and wellbeing in children with cerebral palsy. He will also discuss knowledge gaps and opportunities for additional research and improvements in how we care for children with cerebral palsy with the goal of improving health and quality of life across the lifespan. Dr. Stevenson also looks forward to community input on these questions and more. To join the webinar, please register using the form below or at https://cprn.org/mycp-webinar-series/. A recording of the webinar will be posted to our YouTube channel within 24 hours of the presentation.

Growing Up Well with Cerebral Palsy
a blurred image conveying rapid acceleration in a train tunnel.

Priorities in Adult Cerebral Palsy Research

Professional headshots of four investigators smiling for a cerebral palsy adult study.The Cerebral Palsy Research Network, in partnership with Cerebral Palsy Alliance Research Foundation (CPARF), has awarded its first Accelerator Award, a new internal funding program supported by CPARF to advance critical research questions more quickly. This particular award will be used to prioritize research questions about adults with cerebral palsy (CP). The study, entitled “Priority Setting for Multi-center Research Among Adults with CP” will be conducted by leading investigators focused on adult research – Cristina Sarmiento, MD, (principal investigator), Ed Hurvitz, MD and Mary Gannotti, PT, PhD (consultants) in partnership with Jocelyn Cohen, a community member co-investigator. The study team will lead a series of focus groups around the country to gather input from the community about which health concerns are most pressing to them. This study will build upon the original patient-centered research agenda created through the Research CP program.

The main objectives of this award are to develop a community prioritized set of questions to research through a multi-center clinical trial. The priority setting process will use qualitative methods (a process to find common themes in transcribed answers from focus group participants). Participating community members will be drawn from the CP Research Network’s MyCP community engagement platform and from the CPARF community. They will be involved in every stage of the research process and will have the opportunity to be co-investigators for the study that follows.

Our December webinar will feature the investigative team for this grant. They will provide a more in-depth overview of the planned research and how community members may become involved. This will be a separate webinar from this evening’s webinar on pain classification though it will feature some of the same speakers. Subscribers to our MyCP webinar series will receive an email with the webinar instructions when it is announced in December.

A picture of a plastic model of a lumbar spine.

Webinar: Classifying Pain in Adults with Cerebral Palsy

Four images of our speakers including headshots of Drs Bailes, Gannotti, Hurvitz and NoritzThe Cerebral Palsy Research Network will host its next MyCP webinar on classifying pain in adults with cerebral palsy (CP) next Tuesday, October 24 at 8 pm ET. Gathering more detailed information about a person’s pain will help clinicians determine what treatments may help address it. Leaders in the network’s care improvement for adults, our team that does continuous improvement of outcomes in the treatment of adults with CP, will present plans for the next phase of their work to address pain which is a significant issue in the quality of life for adults. Drs Amy Bailes, Mary Gannotti, Ed Hurvitz and Garey Noritz will present the work of this multi-center implementation effort aimed at establishing the widespread assessment of pain for adults with cerebral palsy.

Why are we focused on pain in adults with CP?

Adults with CP consistently report that they are in pain that often goes unaddressed. In our most recent survey of adults with CP, 78% report that they are in pain. It is part of our vision to work towards addressing the most pressing concerns of the CP community in the most efficient manner possible and pain is at the top of our list.

The CP Research Network’s Adult Care quality improvement team greatly improved how often pain was assessed in adults over the last two years, surging from 24% to over 90% of visits at participating network sites. Now the group is planning the next important step in the systematic treatment of pain – classifying it accurately as a critical step to effective treatment. The clinician researchers will describe:

  • The importance of assessing and treating pain in an adult CP clinic
  • Our findings about pain to date from our Community Registry
  • How pain is classified and why pain classification is important
  • Our process for quality improvement in the care of pain in adults with CP

After the presentations of these topics, the speakers will engage the community
attendees for feedback on the planned work to improve outcomes in treating pain. We encourage adults with CP to attend and participate in this webinar. The webinar is free and open to the public by registering at https://cprn.org/mycp-webinar-series/ or sign up below. The webinar will be recorded and posted to our YouTube channel following the webinar.

Classifying Pain in Adults with CP
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
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.

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.

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!