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.