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!

Datavant - Linking Healthcare Data

Data Linking Partnership Accelerates Discovery in Cerebral Palsy Research

Datavant - Linking Healthcare Data
Datavant – Leaders in Linking Healthcare Data

Yesterday the Cerebral Palsy Research Network announced a partnership with Datavant Corporation of San Francisco, CA, to enable linking of data sets to accelerate new findings in cerebral palsy (CP) research.  The CP Research Network will initially use data linking technology to facilitate the CP Genetics study we are launching next month.  Data linking allows researchers to combine types of information such as genetics and patient descriptions, from different sources to make new discoveries.  For example, participants in the CP Genetics study will provide saliva to Dr. Michael Kruer’s lab at the University of Arizona to identify new genes that are involved in causing CP.  That genomic data will be linked to the participants’ clinical characteristics, or medical description of their CP, found in our CP registry.  This linkage will allow us to find commonalities between genes and how CP appears in the patient population. 

“It is an exciting time in cerebral palsy research,” said Kruer, a neurogeneticist in the Barrow Neurological Institute at Phoenix Children’s and associate professor at the University of Arizona College of Medicine – Phoenix. “This landmark collaboration will enable new breakthroughs in CP genetics that have the potential to transform diagnosis and treatment.” 

Datavant’s data linking technology is unique because it allows this type of information to be connected independent of the timing of annual hospital visits for CP and the choice to be in the study.  Datavant software generates a unique set of identifiers per patient that stored with a medical record but are devoid of any personal identifying information.  The software can be used by new studies such as the genetics study to find matches between patient records and participants’ genes.  This matching process can help facilitate new discoveries in CP by connecting new study data to our CP Registry. The CP Research Network is actively pursuing other existing study datasets that could be linked with our registry to enable new findings to improve healthcare for people with CP. 

Narrow Website Partners with NCHPAD

Want to try a home wellbeing program?

We Have Ten Free Spots Available For A New Wellbeing Program!  Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle.

As we encourage our community to strive for the best possible outcomes we are delighted to partner with the National Center on Health, Physical Activity and Disability (NCHPAD) to bring its MENTOR program to the cerebral palsy community. 

MENTOR, which stands for Mindfulness, Exercise and Nutrition To Optimize Recovery, is a holistic approach is aimed at restoring, improving, and protecting health across the lifespan.

We are able to offer 10 members of CP Community the opportunity to participate in this free eight-week program throughout the months of April and May 2021.  Participants must be members of the MyCP community and 18 years or older.

During the pandemic, NCHPAD has pivoted from an onsite program for health and wellness, to virtual coaching for exercise, mindfulness and nutrition.  The MENTOR program combines adapted exercise, sport and recreation activities with practical healthy eating cooking classes and mindfulness-based stress management techniques to reduce mental health issues such as anxiety and fear.

“Our health coaches will work closely with the CP Research Network and community members to establish the most beneficial exercise, mindfulness and nutrition programs for people with CP,” says James Rimmer, PhD, Director of NCHPAD. “We are excited to partner on this pilot program with the CP Research Network.”

Participants will be provided with equipment to use at home which they will be able to keep at the end of the training. 

The program with be monitored by CP Research Network’s Mary Gannotti, PT, PhD, a professor of physical therapy at the University of Hartford and member of the network’s steering committee.

Interested members of the cerebral palsy community should send an email to mentor@cprn.org

Dr. Michael Kruer

Tune in to our next webinar — Genetic causes of cerebral palsy

We will kick off our ground-breaking “Genetic Causes of Cerebral Palsy” study with an informative MyCP webinar next Wednesday, March 10, at 8 pm EST. 

Dr. Michael Kruer, pediatric neurologist at Phoenix Children’s Hospital, studies the genetic causes of CP.

Dr. Michael Kruer, a neurogeneticist and pediatric movement disorders neurologist at Phoenix Children’s Hospital, will lead the study after receiving CPRN’s first publicly funded (NIH) grant to study the genetic causes of CP. 

Clinicians are hopeful that improved detection of a genetics origin for patients with CP will help individuals to gain treatments tailored to their unique situations faster and more efficiently. 

During the webinar, Dr Kruer will outline the function of the study as well as the types of findings that may be discovered and how those results may impact treatments. 

Three centers in the Cerebral Palsy Research Network will initially participate in the study; Phoenix Children’s Hospital, AZ, AI duPont Hospital for Children in Wilmington, DE, and Seattle Children’s Hospital, WA.  Nationwide Children’s Hospital in Columbus, OH, and Colorado Children’s in Denver, CO, have also expressed interest in participating. Other centers will be added during the course of the enrollment period that is set to end in 2023.

Dr. Kruer previously gave an overview of his research during a MyCP webinar in July 2020   Now, as he prepares to launch the study, he will share why genetics matter and detail recent findings about how genes play a role in the cause of CP. He will also outline who is eligible and how DNA samples will be collected. 

CP families receiving consultations at participating CPRN centers will be invited to enroll in whole exome sequencing analysis for the study which will examine the genetic factors between CP children and their parents. A hospital clinic visit is not necessary to enroll. Participants are required to have a diagnosis of CP. 

If you are not already signed up to view the MyCP webinar series, you can register here

CP Research Network t-shirt

Ways To Support National Cerebral Palsy Awareness Month!

As March kicks off Cerebral Palsy (CP) Awareness month and culminates in National CP Awareness Day on March 25, it gives us a great opportunity to strengthen our community and inform the general public about CP. 

Here are some ways you can support our work and the CP community: 

CP Research Network T-Shirt Store

1) Wear Green! Our community color is green so let’s make our presence known wherever we can! If you missed your chance to order last week, you can still get our shirt and support our common cause!

2) Be sure to log on to Instagram and follow us at cp_research_network. Tune in for our “Take Over Tuesdays” as CP advocates take over our account with their own unique content. Get people talking about CP using the hashtags #gogreenforcp, #researchcp, #cerebralpalsy, #cprnresearch 

3) Help us spread the word about our MyCP webinar series and save the date for Dr. Michael Kruer’s upcoming webinar on March 10 at 8 pm ET. This must-see webinar will outline the impending launch of Dr Kruer’s “Genetic Causes of Cerebral Palsy” study. Follow us on YouTube to get access to all of our MyCP webinars. 

4) Share our Facebook posts and blogs about #CPStories. Every month, we feature the stories of people in our community who are making a difference in CP research. Want to share your own story? Tell us about your experiences for future publication on the CP Research Network blog and social media! 

5) Make a direct donation to support our mission to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming. Your generosity helps our community thrive. 

We all have unique experiences of what CP is, what it is like living with it, and the belief that outcomes can be changed for the better through research. Let’s get out there and shout about our wonderful community!  

Research CP Dystonia Edition

Don’t miss our 2021 MyCP Webinar Series!

Last year, more than 1,000 people logged on for our MyCP webinar series as we came together as a community to discuss cerebral palsy (CP) research. We are thrilled to announce our webinar series will return in 2021 with our first installment, Research CP: Dystonia Edition Results, scheduled for Tuesday, February 9, at 8 p.m. EST. 

Research CP embodies our efforts to engage stakeholders — community members, advocates, clinician and researchers — to set a research agenda that matters to the community.  It began in 2017 with our inaugural effort to establish the top research questions valued by the community. The result was published in Developmental Medicine and Child Neurology in 2018 and has set the research agenda for the CP Research Network.  In 2019, we launched Research CP: Dystonia Edition. We engaged more 160 people in educational webinars on the topic, community members and clinicians generated a prioritized list of unanswered questions about dystonia in CP

The Research CP: Dystonia Edition Results webinar is the summary of our findings from this initiative to set a patient-centered research agenda for dystonia in CP. It will be presented by CP Research Network Chief Executive Officer Paul Gross, Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist from St. Louis Children’s Hospital in Missouri, Darcy Fehlings, MD, a developmental pediatrician from Holland Bloorview Rehabilitation Hospital in Toronto, Ontario, Canada and Michael Kruer, MD, a pediatric neurologist and neurogeneticist from Phoenix Children’s Hospital in Arizona.

To find out more, please visit our MyCP Webinar Series page and follow the instructions to sign up and secure your Zoom link to the online event. Webinars will also be recorded for later viewing.

Throughout 2021, we will bring you eleven monthly webinars featuring principal investigators from the CP Research Network, sharing concepts, development, and goals from their network research.  We will cover a broad spectrum of CP research ranging from genetics to care of adults with CP. The webinars are available for free to all CPRN community members and clinicians.

We encourage all who have participated in this important ongoing process to attend. We hope to see you there!

CPRN Merges with CP NOW

Cerebral Palsy Research Network Merges with CP NOW

We are excited to announce the Cerebral Palsy Research Network (CPRN) has merged with CP NOW, a nonprofit organization for parents and caregivers based in Greenville, South Carolina. 

michele shusterman and paul gross of the CP Research Network
Michele Shusterman and Paul Gross at AACPDM Austin (2015)

Merging CPRN and CP NOW is a natural extension of the longstanding strategic partnership between the two organizations. Previously, CP NOW President and Founder Michele Shusterman has worked as the director of community engagement for CPRN. In turn, CPRN Founder Paul Gross has served as a business advisor to CP NOW. 

Over the last five years, our organizations have collaborated on setting a patient-centered research agenda for cerebral palsy called Research CP, launching the MyCP platform and funding new research to address priorities from the Research CP agenda.  The new organization will conduct its nonprofit business under the name the “Cerebral Palsy Research Network” or “CP Research Network” for short. 

“It is exciting to plan the synergies of merging our two organizations,” said Gross.  “CP NOW has deep connections in the CP community and has produced award-winning education information for families.” 

The CP Research Network will benefit from the combination of community relationships with a large network of hospitals and clinicians engaged in advancing health outcomes for people with CP.

Logistically, Gross will lead the new organization as President and Chief Executive Officer and Shusterman will continue as a director on the board while advancing the education and wellbeing programs.  Jacob Kean, PhD, an associate professor at the University of Utah, will continue to lead the network’s data center and cerebral palsy registry efforts and join the board of directors.

The CP Research Network’s digital platform, cprn.org, will include the blog CP Daily Living, CP NOW’s award-winning CP Toolkit and Wellness Guide, and MyCP, a web property for the CPRN Community Registry and Forum. This digital resource will provide a single place for the CP community and clinician researchers to come together to advance health outcomes for people with CP and facilitate deeper community stakeholder engagement in research.

Many of these changes will be rolled out incrementally over the coming weeks, starting with some of our social media platforms.  Our website, which brings together all of the information from our four web properties, will be the keystone supporting our mission.

We hope you will join us in celebrating this pivotal moment for our two organizations. Together, as one entity, we will add a strong community voice to our research, educational, and wellbeing efforts.

Silver Linings

The Silver Linings of 2020 for Cerebral Palsy Research

Dear friends, 
Last year was a difficult year for everyone, not least the healthcare workers that power the advances we are seeking for people with cerebral palsy.   The adjustments to medical practices due to COVID-19 left clinical research efforts scrambling to adjust to the “new normal”. As lockdowns occurred, and in-person clinics and elective surgeries were limited, many in our community had to find new, versatile ways to carry out their work.  

If we can focus on one silver lining during this unprecedented time, it is how our collaborative network structure not only endured but thrived over the past year. Our investigators, who are predominantly clinicians, stepped up to the challenge, embracing a more virtual world and ensuring The CP Research Network held more meetings and advanced more research in 2020 than any prior year.   

Our energy went into three focus areas:   

  • strengthening our engagement of the community in research through our MyCP platform; 
  • advancing our research portfolio to improve outcomes;  
  • and starting to fulfill our strategic objective to translate knowledge by launching educational programming, and publishing and presenting our work.  

Community Engagement  
The MyCP forum continues to foster unique conversations between community members and clinician researchers in the pursuit of evidence-based medicine, best practices, and the prioritization of research. Our latest community prioritization project, Research CP Dystonia Edition (link), concluded with the engagement of more than 160 people from the clinical and patient community. This ensured we could quantify the top research themes for the perplexing condition of dystonia in CP. We will be publishing that data in due course.  

Research Successes  
We are thankful for the additional time many physicians gave us to revise our CP Registry data collection forms and their patient insights about spasticity, orthoses, devices, and physical therapy. In 2020, the registry grew from approximately 2,000 patients to more than 4,400 patients, ensuring we have a wealth of invaluable information for our research efforts.   

We were also proud to add three additional centers to the network, expanding our footprint and adding more passionate clinician researchers to our team. Welcome to Akron Children’s Hospital, Columbia University’s Weinberg Family Cerebral Palsy Center, and the Shirley Ryan Ability Lab. We are grateful for your input and expertise.  

Other wins for the year included three studies that received funding, two new studies launched in our Community Registry, and a second large scale clinical study submitted to the National Institutes of Health (NIH).  

We also expanded our pursuit of improved outcomes by launching three new improvement initiatives aimed at adult care, dystonia diagnosis, and hip surveillance.  

These are in addition to our existing improvement project to reduce infections from intrathecal baclofen pumps.  

Improvement science enables rapid test cycles to improve outcomes faster than traditional research methods. These projects build on our clinical CP registry which provides a foundation for measuring the impact of changes in the health outcomes for people with CP.    

Efforts to Educate 
The MyCP webinar series, a new initiative for 2020, enabled hundreds of community members and clinicians to learn about our studies directly from researchers and engage in meaningful dialogues about the progress, importance, and potential impact. 

The 2020 launch of a patient education blog series, featuring guest author Lily Collison, has brought a fresh, new voice to people with spastic diplegia as she shares her take on diagnosis, life, and treatment.  

The publication of our Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report also gave the clinical research community detailed insight into our foundational work in CP.  

Looking forward to 2021  
We have big plans for 2021 as we launch our Genetics of CP study with Dr. Michael Kruer, research that was funded by NIH in 2019. Check out this recent article by Dr. Kruer which highlighted how the discovery of some genes related to CP has informed treatment for more safe and effective outcomes.  

As we navigate another exciting year of research and patient resources, we are preparing to announce new partnerships that will strengthen our research capabilities and broaden our relationship with the community.   

With five articles under development and more are on the horizon, the future is looking bright for our community.  

We hope you have a good year and please stay engaged with us in the CP Research Network.  

Schiariti Pland Rehab, 2016

The importance of facilitating empathic and meaningful clinical encounters

Importance of facilitating empathic and meaningful clinical enocounters

Veronica Schiariti, MD, MHSc, PhD

Dr. Verónica Schiariti, a developmental pediatrician at the University of Victoria, in Canada, led the development of the International Classification of Functioning, Disability and Health (ICF) guidelines for children and youth with cerebral palsy (CP). In a guest blog for the CP Research Network, she examines why ICF is so important for our community…

What does health mean to you?

For children with cerebral palsy being healthy means being able to participate in different activities with their peers, playing, enjoying the moment, being appreciated for who they are, regardless of their physical differences.

Twenty years ago, the International Classification of Functioning, Disability and Health, (ICF) was created by the World Health Organization to encourage the identification of strengths and functional goals of every person and the planning of interventions accordingly.

Importantly, the ICF incorporates the fundamental human rights of persons with disabilities, and the principles of an international treaty, the Convention on the Rights of the Child. The ICF provides a valuable reference for monitoring aspects of children’s rights, as well as for national and international policy formulation.

For me, the ICF allows us to describe health in a more concrete way, what a person with a health condition can or is able to do every day, and, most importantly, the environment that helps or hinders the person’s ability to function every day.

As a child health researcher and disability advocate, I have created different educational tools to promote the adoption of the ICF in research and clinical practice. The ICF Educational e-tool illustrates how to apply the ICF into day-to-day practice and MY ABILITIES FIRST is a series of animations giving patients the autonomy to create an ability identification card to describe their abilities from their perspective.

I hope persons with disabilities, their families, and professionals working with people with disabilities, continue to adopt the ICF and ICF-based tools to improve communication, service provision, and ultimately facilitate empathic and meaningful clinical encounters.

During my years working with children with CP, I have learned that they celebrate their abilities and do not concentrate on limitations, not nearly as much as health professionals do. This must change. 

About the author: Dr. Verónica Schiariti MD MHSc PhD is a physician-scientist whose work bridges clinical research and international child health.

Dr. Schiariti led the development of the ICF Core Sets for children and youth with CP in collaboration with the ICF Research Branch in Switzerland. A pediatric international ICF scholar, she is helping to implement the ICF Core Sets for children and youth with CP in different countries.

Dr. Garey Noritz

CP Stories: Dr. Garey Noritz

As the new chair of the AAP’s Council on Children with Disabilities, Dr. Garey Noritz has the cerebral palsy community in mind.

CP Stories

Dr, Garey Noritz, Developmental Pediatrician, Nationwide Children’s Hospital

A long-time supporter of the CP Research Network, Dr. Garey Noritz understands how vital the American Academy of Pediatrics’ commitment to helping children with disabilities is for the cerebral palsy community.

Now, in his new role as chair of the organization’s Council on Children with Disabilities (COCWD), he is determined to ensure that all children with disabilities – and their broader community needs – are kept at the forefront of the AAP’s work.  

He tells the CP Research Network: “The health of children can only be improved by improving conditions for children and families in all areas of their lives as we advocate for safe environments, effective schools, and most of all, just policies at the federal and state level.”

As an internist and pediatrician specializing in neurodevelopmental disabilities at Nationwide Children’s Hospital in Columbus, Ohio, Noritz is a member of the CP Research Network’s Executive Committee and understands how COCWD provides vital support to our community.

The council is presently revising a clinical report, “Providing a medical home for children and youth with cerebral palsy,” from 2011 to ensure that it contains the most up-to-date information and guidance for pediatricians treating children with cerebral palsy. 

For many years, COCWD has played an essential role in improving care for those with cerebral palsy. This includes providing clinical reports to pediatricians on all aspects of the care of children with disabilities, from screening and diagnosing young children to transition to the adult health system.   

“There is a lot of political clout with the AAP, so it is important to make sure children with cerebral palsy are represented and advocated for,” he adds.

Excited to begin his new role, Noritz credits the council as one of the most active and influential AAP groups and is excited to continue its legacy.

As we come to the end of a year that brought countless health and racial inequities to the surface, Noritz is determined to ensure that no child is left behind and lists inclusivity, research, advocacy, and education as priorities. 

Encouragingly, as he begins this important work, he expresses a wish to continue to have open communication with CPRN members to understand the community’s continuing needs.  

Congratulations, Dr. Noritz. We’re excited to work with you in your expanded capacities!

Genes and Cerebral Palsy

Genes and Cerebral Palsy

Michael Kruer, MD
Michael Kruer, MD

The Cerebral Palsy Research Network (CPRN) researcher Michael Kruer MD, a movement disorders pediatric neurologist and geneticist at the University of Arizona, was published last month in Nature Genetics for his work on the discovery of genes that may cause cerebral palsy (CP) by impairing the wiring of brain signals during early development.  These findings support the need for broader research being conducted by Dr. Kruer and CPRN. The early study of these genes led to treatment changes in some patients.

The published paper was based on genetic sequencing from 250 parent and child combinations (trios).  The CPRN study, led by Dr. Kruer and funding by the National Institutes of Health, will allow the analysis of a rich set of patient characteristics captured in the CPRN CP Registry in conjunction with genomic analyses for 500 additional trios. The findings from this study hold the promise to improve diagnoses and treatments for children with CP. Identifying genetic causes is key to providing personalized or precision medicine which will help tailor interventions for people with CP to enable more effective treatments.

When asked to explain the significance of these findings, Dr. Kruer said, “this study is the first firm statistical and laboratory evidence that a substantial proportion of CP cases are caused by genetic mutations; findings indicate CP genes don’t map to clotting and inflammation but more to early brain development; although brain wiring is complex, findings suggest new targeted therapies for CP are possible (rather than focusing simply on reducing symptoms as is current paradigm); early experience indicates that for some participants, genetic findings directly changed their clinical management (avoiding complication, reaching for best treatment first, or even prompting a completely new treatment that would not otherwise have been tried).”

 

 

We look forward to beginning to enroll patients from the CPRN CP Registry into this study in the coming months.