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!

A small preview image linking to blog post ‘The Silver Linings of 2020 for Cerebral Palsy Research’.

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.  

A preview image leading to blog post ‘The importance of facilitating empathic and meaningful clinical encounters’

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.

A preview image of Dr. Garey Noritz leading to blog post ‘CP Stories: 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!

A preview image of Dr. Michael Kruer leading to blog post ‘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.

 

A headshot of a smiling man with short salt and pepper hair and a beard is wearing glasses, a black suit, and a light blue tie.

CPRN Investigator Funded for Feasibility Study

CPRN Investigator Funded for Feasibility Study

Ed Hurvitz, MD, Chair of Physical Medicine and Rehabilitation, University of Michigan

Edward A. Hurvitz MD of Michigan Medicine, University of Michigan and Cerebral Palsy Research Network (CPRN) Executive Committee, was awarded the Foundation for Physical Medicine & Rehabilitation Gabriella Molnar grant for a project entitled “Feasibility of Adding Grip Strength Measures to Body Composition Assessments in Individuals with Cerebral Palsy.”  The aim of the project is to test the feasibility of adding measures such as waist-hip circumference, skinfold measures, and grip strength to a regular clinic appointment for individuals with cerebral palsy (CP) from age 8 through adulthood, and then potentially as data points in the CPRN CP Registry.  The Michigan Adults with Pediatric Onset Disabilities research group has published extensively on chronic disease risk in adults with CP.  Body composition and grip strength are well documented indicators for risk of morbidity and mortality in typical developing populations, and obesity has been associated with risk of multi-morbidity in adults with CP, including young adults between ages 18-40.  The study will also include a history of chronic disease with an exploratory aim to correlate body composition and hand grip findings to history. 

CPRN congratulates Dr. Hurvitz and his colleagues for their success in funding this research which was originally approved as a concept for CPRN in April 2019. This study addresses top priorities from Research CP, including the study of the effects of aging with cerebral palsy as well as laying the groundwork to do studies of exercise strategies to promote better health outcomes.  Co-investigators on the study include Drs. Mark Peterson, Dan Whitney, Heidi Haapala, Mary Schmidt, Angeline Bowman and Jessica Pruente. The funding amount is $10,000 dollars, to be used for measurement equipment and research assistance.  The start date is December 1, and the study is planned for 18 months.

The World Cerebral Palsy Day logo

World CP Day — Make Your Mark

World Cerebral Palsy Day

World Cerebral Palsy Day

 

 

 

 

 

 

The Cerebral Palsy Research Network (CPRN) is proud to participate in this year’s World CP Day.  We at CPRN, with our partner CP NOW, are enabling members of the cerebral palsy (CP) community to “Make Your Mark” through participation in CP research.  A little less than a year ago we launched MyCP.org and invited the extended CP community to make a difference by contributing to research – setting research direction, contributing your experience and interacting with clinician researchers committed to improving outcomes for people with CP.  MyCP is now over 1,000 people strong providing news, discussions and opportunities to participate in research from your phone or computer.  This past March we launched the MyCP webinar series so members of the community could learn about CPRN research initiatives directly from CPRN researchers.  Our research reaches from diagnosis into retirement so our community of people with CP, parents, advocates, clinicians and researchers are working to improve quality of life throughout the lifespan.  Join MyCP and tell us how you have made your mark!

The Cerebral Palsy Research Network Registry in the Archives of Rehabilitation Research & Clinical Translation.

How CPRN built its Cerebral Palsy Registry

How CPRN built its Cerebral Palsy Registry

CPRN Registry Described in the Archives of Rehabilitation Research & Clinical Translation

The Cerebral Palsy Research Network (CPRN) announced that its third publication entitled “Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report” was published in Archives of Rehabilitation Research and Clinical Translation this past week.  The publication is “open access” meaning that anyone from the cerebral palsy (CP) community can read the article free of charge.  The article, authored by the founding members of the CPRN Executive Committee, describes the creation of the CPRN Registry from a process perspective – who was involved, what were the objectives and how and why were the data elements chosen for inclusion in the registry.

In addition to defining the process, the article also provides a baseline registry report for the first few years of data collection.  This preliminary report provides a descriptive analysis of the first 1858 patients – demographics, movement disorder, gross motor capabilities, and other clinical characteristics — included in the registry from eight sites.  Since this articled was drafted, the registry has grown to more than four thousand patients from 10 sites.  The registry is expected to continue to grow in step functions as more sites come online with their clinical practice supporting the registry.

The article also discusses how the CPRN registry uniquely leverages hospital electronic medical records (EMR) systems to include large volumes of data without burdening clinicians.  The CPRN registry database has been built into Epic – one of the leading EMR systems.  Development is underway for Cerner – another leading EMR system. The discussion section of the article also compares the focus of the CPRN Registry to the Common Data Elements for CP as defined by the National Institute of Neurological Disorders and Stroke in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine.

CPRN’s other publications can be found on our publications page.

A preview of different features from the Cerebral Palsy Research Network’s website leading to blog post ‘CPRN Turns Five!’

CPRN Turns Five!

The Cerebral Palsy Research Network (CPRN), founded in the summer of 2015, has reached its fifth anniversary. Born out of a 2014 workshop organized by the National Institutes of Health (NIH) and first designed to achieve a national registry for cerebral palsy (CP), CPRN has emerged as a multi-focus initiative and one that has given rise to a lasting partnership between the community and clinician researchers to improve outcomes for people with CP.

A 5-year strategic plan created in 2016 led to the realization of the following major milestones:

  • Engagement of community, clinical and research stakeholders to set and prioritize a patient-centered research agenda. The engagement was accomplished through the establishment of a Community Advisory Committee and the execution of two patient-centered research setting initiatives called Research CP, the first of which was funded by the Patient Centered Outcomes Research Institute (PCORI). This research agenda guides CPRN’s research focus and is influenced, dynamically, via ongoing community engagement in MyCP.org which was launched in the spring of 2019.  MyCP.org is a web portal that provides the community with opportunities to engage in CP research by participating in surveys and/or discussions with clinicians and researchers.
  • Establishment of registry infrastructure to accelerate CP research. This infrastructure includes two registries: a clinical CP registry and a community CP registry. The clinical registry includes data from more than 4,000 patients from 17 enrolling centers and will grow as more of the 28 centers committed to hosting the registry contribute their patient data. The community registry, where community members register themselves and contribute their data and perspectives on CP, launched in 2019 with the inaugural annual survey of adults with CP.
  • Facilitation of multidisciplinary research collaboration. Clinician researchers from multiple disciplines and multiple centers are tackling pressing and patient-centered research questions and quality improvement initiatives designed to improve outcomes for persons with CP. CPRN has submitted multiple grants and has received funding from NIH, PCORI, non-governmental organizations and private foundations for projects such as studying epilepsy in CP, genetics in CP and speech and language predictors of participation in CP. CPRN has also internally funded five quality improvement initiatives: adult care, dystonia, hip health, intrathecal pump infections, and care transitions, all of which seek to rapidly change clinical processes to improve outcomes for persons with CP.

The next five years promise new centers joining CPRN, more data collection and contribution from existing centers, and the development of many new patient-centered research and quality improvement initiatives. The anticipated growth will advance our development as a Learning Health Network that continuously improves treatments and outcomes for CP through research and quality improvement. Our focus over the next five years will give us more ways to engage the CP community and enhance outcomes locally, nationally and internationally.

A preview of pie charts showing the membership of the MyCP portal leading to blog post ‘MyCP.org reaches 1000 participants’.

MyCP.org reaches 1000 participants

MyCP.org, a web portal supporting community engagement in research for cerebral palsy (CP), crossed the milestone of 1,000 users this past week! MyCP.org is owned and operated by the Cerebral Palsy Research Network (CPRN) to provide a place for members of the extended CP community – people with CP, parents and caregivers, advocates, clinicians and researchers – to collaborate on advancing research to improve outcomes for people with CP. Community members can interact to share experiences, advise on research priorities, or learn about existing evidence for various medical treatments. Physicians and therapists that both treat and research the condition of CP often engage in the conversation or seek community input.

MyCP provides several functions for the community including:

Members of the community may contribute their experiences with each other and connect with researchers seeking to understand the experiences of people with CP and partner together for advancing research.  In addition to participation in research, the forum provides members with an opportunity to verify the latest evidence in support of medical and surgical treatments.  For example, this week a community member sought knowledge about an orthopedic surgery and received a reply from a renown CP orthopedic surgeon within 24 hours. (Please note: that MyCP is not a place to ask for medical advice, rather it is a learning and support environment where evidence for the general population may be shared. Talk to your medical team for specific information about you or your loved one’s condition, their specific needs or to understand how existing evidence may or may not apply to your situation and goals. )

MyCP is a resource for the whole community and our programming has been generously promoted by the CP Foundation, CP NOW and UCP.  CPRN thanks these organizations for the sharing our studies with the broader CP community. We look forward to reporting the results of the research back to their audiences over time.

MyCP’s community is made up predominantly of adults with CP, parents of children with CP and medical providers who treat people with CP. It also includes researchers, advocates and industry professionals. People from the community make up 80% of the participants and clinicians are 14%.  Of the 813 members of the community, 58% are people with CP and 37% are parents. There is also a teen only forum. There are many active studies for the community to participate in including “Speech and Language Predictors of Participation for Children with Cerebral Palsy” for the parents of children between 4-17 and the “Adult Study of Personal Wellbeing, Pain and Stigma.”  Please join the conversation and help make a difference in outcomes for people with CP!

A preview image leading to blog post ‘Webinar: Patient Reported Outcomes and Shared Decision Making’.

Webinar: Patient Reported Outcomes and Shared Decision Making

Webinar: Patient Reported Outcomes and Shared Decision Making

Unni Narayanan, MD, MSc

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar Series will feature Unni Narayanan, MD, MSc who is a pediatric orthopedic surgeon at SickKids in Toronto, Canada on Monday, August 17, at 8 pm ET. The topic is “Can we make patient reported outcome measures useful to patients and parents?” Dr. Narayanan has developed several patient-reported outcome (PRO) measures to assess the effectiveness of surgical interventions in cerebral palsy (CP). Now his research is seeking to determine if those PROs can be used to facilitate a shared decision making between patients/caregivers and clinicians. Shared decision making is a process by which clinicians and patients or caregivers collaborate to understand the evidence base behind interventions and the tradeoffs between interventions or alternatives to surgeries and medications. Shared decision making is very important in CP because most surgeries are elective. Dr. Narayanan will present his recently funded research project being done in conjunction with CPRN and then take questions from attendees. The presentation will be approximately 20 minutes followed by an open ended Q&A.

Parents, caregivers and adults with CP can access the PROs developed by Dr. Narayanan by joining MyCP.org where they can be found in the CPRN Community Registry. After completing one of these measures, you can print out the results to share them with your CP physician and facilitate the shared decision making process now!

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!