Join | Sign In
My Cerebral Palsy
  • Home
  • Resources
    • About MyCP
    • The Gross Motor Function Classification System: Why is it so important?
    • MyCP Webinar Series
    • FAQ
  • Research News
  • Forum
  • Surveys

Archive for CPRN News

Silver Linings for Cerebral Palsy Research

The Silver Linings of 2020 for Cerebral Palsy Research

Posted on January 15, 2021
by Paul Gross
No Comments

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, 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.

CPRN News

Webinar: Surgical Spasticity Treatments for Children who are not Ambulatory

Posted on October 21, 2020
by Paul Gross
No Comments

Sruthi Thomas, MD, PhD, Pediatric Physical Rehabilitation and Medicine

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on surgical spasticity treatments for children who are not ambulatory on Monday, October 26 at 8 pm ET. Sruthi Thomas, MD, PhD, a pediatric physical medicine and rehabilitation physician from Texas Children’s Hospital, will share her formative work in this topic identified by Research CP. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Thomas has initiated a number of lines of study on spasticity management for cerebral palsy (CP) to build preliminary data in support of a large multi-center comparative effectiveness research (CER) grant application. Spasticity interventions have been studied more in children with CP who are ambulatory so a CER study that helps determine which interventions work best in children who are not ambulatory is needed. Parents are increasingly faced with very difficult choices between surgical spasticity interventions to address pain, care and other activities for these children.  In this webinar, Dr. Thomas will talk about the state of the evidence, the importance of research and the studies she is planning to answer critical questions for this population.

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!

CPRN News, CPRN Studies, New CP studies, Research CP

CPRN Investigator Funded for Feasibility Study

Posted on October 8, 2020
by Paul Gross
2 Comments
Dr. Ed Hurvitz, Chair of Physical Medicine & Rehabilitation, University of Michigan

Dr. Ed Hurvitz, Chair of Physical Medicine & 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.

CPRN News, CPRN Studies, Research CP

How CPRN built its Cerebral Palsy Registry

Posted on September 10, 2020
by Paul Gross
No Comments
CPRN Registry Publication

CPRN Registry Publication

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.

CPRN News, CPRN Studies
Research CP Workshop

CPRN Turns Five!

Posted on August 27, 2020
by Paul Gross
No Comments

The Cerebral Palsy Research Network (CPRN), which owns and manages MyCP.org, was founded in the summer of 2015 and 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:

    Research CP

    Research CP

  • 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. 
    GMFCS in the CPRN Registry

    GMFCS in the CPRN Registry

    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. 

    CPRN investigators gathered in Ann Arbor, to advance studies of CP

    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.

CPRN News

MyCP Webinar: Can we make patient reported outcome measures useful to patients and parents?

Posted on August 13, 2020
by Paul Gross
2 Comments
Dr. Unni Narayanan

Dr. Unni Narayanan is a pediatric orthopedic surgeon at SickKids

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!

CPRN News, CPRN Studies
San Francisco Skyline

CPRN Launches Knowledge Translation Tuesday!

Posted on July 29, 2020
by Paul Gross
9 Comments

The Cerebral Palsy Research Network launched a new blog series with guest author Lily Collison to chronicle her decision making for her son’s spastic diplegia treatments and outcomes. We have previously interviewed Ms. Collison for the MyCP Webinar Series. Ms. Collison will be available to answer further questions about her experience on the MyCP Forum. Knowledge Translation Tuesday will be a weekly post on CPRN cross posted on MyCP about how parents and people with CP can translate the evidence available for treatments to decision making in conjunction with clinicians.

Selective Dorsal Rhizotomy in Adults

Cross posted from CPRN.org on July 28, 2020

River Shannon trail in Limerick, Ireland

River Shannon trail in Limerick, Ireland

I’m Lily, mother of Tommy who is now aged 26. Tommy grew up in Ireland, studied journalism at New York University, and now lives in San Francisco where he works at Lambda School (an online coding school). Tommy has spastic diplegia, GMFCS level II. I recently published Spastic Diplegia–Bilateral Cerebral Palsy in conjunction with Gillette Children’s Healthcare Press. The book is a mixture of detailed medical information combined with a personal story, and all proceeds go to cerebral palsy (CP) research. I’m now going to be a guest author for the Cerebral Palsy Research Network (CPRN).

In February of this year Tommy had selective dorsal rhizotomy (SDR) at Gillette Children’s Specialty Healthcare, in Minnesota. SDR is a neurosurgical procedure that reduces spasticity by selectively cutting abnormal sensory nerve rootlets in the spinal cord. This procedure is mostly carried out in children and to a much smaller extent in adults. Recent research carried out by CPRN showed that 5% of those who have SDR were over 18 years. Tommy is therefore one of the minority of people who have SDR in adulthood. Over the next few weeks, I’ll write about SDR in adulthood and Tommy will also contribute (when he gets a break from working and rehabbing 🙂)

At this stage Tommy has a thick patient file at Gillette. At age nine he had single-event multilevel surgery (SEMLS) to address muscle and bone problems that had developed as he grew. At age sixteen he had orthopedic surgery to address knee pain, and at age eighteen a further minor orthopedic surgery. The possibility of SDR was first raised in Fall 2019, at a routine orthopedic appointment with Dr. Novacheck, Tommy’s orthopedic surgeon at Gillette for many years. A multi-disciplinary appointment was organized for December with consultants from neurosurgery, physical medicine and rehabilitation (PM&R), and orthopedics to evaluate Tommy’s suitability for SDR. The clinicians agreed that Tommy was a suitable candidate, and Tommy agreed to proceed with the surgery. SDR was carried out in February of this year, right before COVID caused widespread shutdown in March.

To receive email updates for these and are CPRN blog posts, you can subscribe.

Do you have questions for me about this post? I’m available on the MyCP.org forum (you will need to join MyCP if you are not a member) to discuss it.

CPRN News, Knowledge Translation

CPRN Adds Speech Study

Posted on July 1, 2020
by Paul Gross
No Comments

Kristen Allison, PhD, CCC-SLP

Kristen Allison, PhD, CCC-SLP, is the principal investigator for CPRN’s Speech and Language Predictors of Participation for Children with Cerebral Palsy in the Community Registry at MyCP.

The Cerebral Palsy Research Network (CPRN) added a new study to its Community Registry hosted on MyCP. The study is entitled “Speech and Language Predictors of Participation for Children with Cerebral Palsy.” The study is intended for parents or caregivers of children ages four (4)-17 years old. The study was developed by Dr. Kristen Allison, an assistant professor in the Department of Communication Sciences and Disorders and the director of the Speech Motor Impairment & Learning (SMILe) Lab at Northeastern University in Boston, MA.

The study consists of three sequential surveys on MyCP and takes approximately 30-45 minutes to complete. The study seeks to enroll 120 participants each of whom will be compensated with an Amazon gift card for $20 for their time and effort. Knowledge gained from the study will be very important for understanding the effect of speech on participation for children with CP which is critical to their quality of life. If you haven’t already signed up to participate in studies on MyCP, you can go to the survey page to read the consent and then proceed to participate in the study or sign up for MyCP if you haven’t joined yet.

CPRN News, CPRN Studies, New CP studies

Sign Up for Upcoming Webinars

Posted on June 30, 2020
by Paul Gross
No Comments

Book: Spastic Diplegia -- Bilateral Cerebral Palsy

Book: Spastic Diplegia — Bilateral Cerebral Palsy

Lily Collison, Author

Lily Collison, Author, Spastic Diplegia — Bilateral Cerebral Palsy

On Wednesday, July 8 at 8 pm ET, we are excited to interview author Lily Collison who is the mother of a young adult with spastic diplegia. Ms. Collison was inspired to write a book, a manual of sorts, for parents of children with spastic diplegia bilateral cerebral palsy to share the many learnings she has had on her journey with her son and his CP. He recently underwent a selective dorsal rhizotomy for the treatment of his CP.

Dr. Michael Kruer

Dr. Michael Kruer will speak on genetics and cerebral palsy.

And then MyCP webinar series continues with episode #5 as Dr. Michael Kruer describes his work in genetics and cerebral palsy (CP) entitled “Genetics and cerebral palsy — what difference does it make?” Dr. Kruer is a leading researcher in CP genetics and was recently awarded a three million dollar grant to study genetic factors in CP in partnership with the Cerebral Palsy Research Network. He is also the chairman of the International Cerebral Palsy Genomics Consortium. His presentation on Thursday, July 23 at 8 pm ET (NOTE: we moved this event from July 9) will describe the importance of understanding the genetics underlying CP and how his research will unlock important new findings about causes, treatments and outcomes.

Both webinars will last approximately 50 minutes and be split equally between presentation/interview and open Q&A with attendees. If you haven’t signed up for the MyCP webinar series, sign up to receive webinar invite information via email. Both webinars will be recorded and available for future viewing.

CPRN News, CPRN Studies

MyCP Webinar Series: Treating Spasticity

Posted on May 30, 2020
by Editor MyCP
No Comments

Paul Gross, Chairman and Founder of CPRN

Paul Gross, Chairman and Founder of CPRN

The MyCP webinar series continues this week with a presentation on variations treating spasticity in cerebral palsy (CP). The chairman and founder of the Cerebral Palsy Research Network (CPRN) and Associate Professor at the University of Utah, Paul Gross, will present his findings in a webinar entitled “Practice Variation is Spastic Cerebral Palsy” on Tuesday, June 2, at 8 pm ET via Zoom. The presentation will focus on the surgical treatments for spasticity and how different hospitals approach surgical treatments such as selective dorsal rhizotomy and intrathecal baclofen pumps. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. Gross interviewed more that 40 physicians across North American that treat children with spastic cerebral palsy. This qualitative data from these interviews will be combined with quantitative data from the CPRN CP Registry to provide a broad picture of the surgical treatments for spasticity. While the interviews were focused on surgical treatments for children that are ambulatory, the CPRN CP Registry includes information about children that are not ambulatory which will be included in the presentation.

The presentation will be approximately 20 minutes and followed by an open Q&A with Mr. Gross. People interested in attending or accessing the recording afterward may sign up on CPRN. The webinar is open to the entire CP community including people with CP, caregivers and clinicians but the information will be suited for the non clinicians.

CPRN News, CPRN Studies, New CP studies
Next Page →

Contact Us

Paul Gross, Chairman
Cerebral Palsy Research Network
University of Utah
Williams Building
295 Chipeta Way, Room: 1N455
Salt Lake City, UT 84108

Phone: 402 302-CPRN (2776)
Email: paul@cprn.org

My Cerebral Palsy | Copyright © 2021 All Rights Reserved
My Cerebral Palsy by Cerebral Palsy Research Network | Powered by WordPress
MyCP.org is wholly owned and operating by Cerebral Palsy Research Network
DBG: 0 : :

Search MyCP