Research presents cerebral palsy research updates, funding and funding opportunities, as well as new publications and the information offered within them, to keep the cerebral palsy community informed. Learn how you can be a part of the conversations by joining MyCP, an interactive cerebral palsy community forum, today!

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!

A group of men and women clinicians from the Weinberg Family Cerebral Palsy Center gather for a photo.

Columbia’s Weinberg Family Cerebral Palsy Center Joins CPRN

The Cerebral Palsy Research Network (CPRN) announced that the Weinberg Family Cerebral Palsy Center (WFCPC) from Columbia University’s Irving Medical Center has joined the network.  The WFCPC is CPRN’s first site in New York City and provides a large and diverse patient population, including children and adults, for the studies conducted by CPRN.  The participation in CPRN, led by Jason Carmel, MD, PhD, includes an interdisciplinary team from orthopedic surgery, rehabilitation medicine, neurology and other clinical disciplines contributing patient and intervention data to the CPRN Cerebral Palsy (CP) Registry.

The Weinberg Family Cerebral Palsy Center is dedicated to improving the quality of life for people of all ages living with CP by providing comprehensive care, conducting groundbreaking research, and educating medical professionals, patients, and caregivers about the latest advances in cerebral palsy care. Members of the Weinberg CP Center team conducted over 3,700 patient encounters in 2019. Pediatric and adult services include orthopedics, physical medicine and rehabilitation, neurology, genetics, and mental health, along with social work and care coordination services. In conjunction with its clinical care mission, the Center’s academic efforts strive to bridge basic science and clinical research to directly impact the lives of patients living with cerebral palsy.

 “The goals and values of the CPRN are perfectly aligned with those of the Weinberg CP Center, and the CPRN is an incredible resource for multidisciplinary research and collaboration,” said Dr. Jason Carmel. “Our team is excited to begin contributing to the CPRN’s efforts, as well as participate in projects and initiatives that will undoubtably lead to a better understanding of how we can improve the lives of our patients.”

A white speech bubble against a lime green background with the words ‘Let’s talk about CP’.

Webinar: Practice Variation in Spastic Cerebral Palsy

Paul H. Gross
Paul Gross, Chairman and Founder, CPRN

The Cerebral Palsy Research Network (CPRN) announced its fourth webinar in its MyCP Webinar Series entitled a “Practice Variation in Spastic Cerebral Palsy” would be open to the public on Tuesday, June 2 at 8 pm via Zoom.  Paul Gross, chairman and founder of CPRN and Adjunct Associate Professor at the University of Utah, will present his findings in practice variation in spasticity management in North America.  This 20-minute presentation will be followed by an open Q&A with Mr. Gross.

Paul Gross is the principal investigator for an internally funded study to look at practice variation in the treatment of people with spastic cerebral palsy (CP). The presentation will include qualitative data from interviews that Mr. Gross conducted with more than 40 clinicians in North America about their spasticity management practices and also data from the CPRN CP Registry about surgical interventions for spasticity including selective dorsal rhizotomy and intrathecal baclofen pumps from five centers. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. While many treatments have been shown to be efficacious, clinical practice for treating spasticity varies greatly across North America. This presentation is planned for members of the community that are interested in learning about treatment differences and futures studies of spasticity management. Gross’s qualitative work has been used as preliminary data for the development and submission of two two grant applications to the National Institutes of Health to further study these variations in practice.

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!

A preview image leading to blog post ‘Vote for the Most Important Research Questions for Dystonia in CP!’

Vote for the Most Important Research Questions for Dystonia in CP!

The Cerebral Palsy Research Network (CPRN) invites you to cast your vote for the most important questions we need to answer about the diagnosis and treatment of dystonia in cerebral palsy (CP).  Register to vote by June 12th at MyCP.org to cast your online ballot the week of June 15, 2020! If you are a member of the patient community or a clinician that treats people with CP, your vote is your chance for your voice to be heard and influence the research agenda for dystonia in CP.

CPRN has had more than two hundred people participate in our education program about dystonia in CP. Research CP Dystonia Edition is an extension of CPRN’s original patient-centered education program and prioritized agenda published in August 2018 in Developmental Medicine and Child Neurology. The goal of this program is to focus attention on this under-researched condition in CP and to generate and publish a patient-centered list of prioritized concerns. 

Research CP Dystonia Edition participants have already created a list of “uncertainties” or questions that need to be resolved through research.  CPRN will open up voting up to the whole CP community – people with CP, caregivers, clinicians, therapists and advocates – for one week in mid-June 2020 to set the priorities.  Community members interested in voting on dystonia in CP research priorities should sign up on MyCP.org to receive voting instructions prior to voting.

CPRN will publish the resultant patient-centered research agenda and disseminate the results broadly to guide researchers in addressing the concerns that are most pressing to the community.  Since its publication in 2018, Research CP is often cited in other publications and research grants to reflect community priorities and steer research efforts to those that are most meaningful to the community. 

A preview image linking to blog post ‘Webinar: Cerebral Palsy and Epilepsy’

Webinar: Cerebral Palsy and Epilepsy

Adam Ostendorf, MD
Adam Ostendorf, MD

The Cerebral Palsy Research Network (CPRN) announced its third webinar in its MyCP Webinar Series entitled a “Report on Cerebral Palsy and Epilepsy” would be open to the public on Tuesday, May 5 at 8 pm via Zoom.  Dr. Adam Ostendorf, a pediatric neurologist at Nationwide Children’s Hospital, will present his findings about epilepsy in the cerebral palsy (CP) population from the CPRN Registry.  This 20-minute presentation will be followed by an open Q&A with Dr. Ostendorf.

Dr. Ostendorf is the principal investigator for the CPRN epilepsy study group which received funding from the Pediatric Epilepsy Research Foundation to extend the CPRN CP Registry to gather important data about children who also have epilepsy.  Epilepsy is the most common co-morbid condition with cerebral palsy occurring in more than 30% of patients.  But little research has been conducted on this unique population.  Dr. Ostendorf will provide a community focused presentation on the data gathered since his grant was funded in 2018 and the implications for future research.  The CPRN epilepsy study group includes neurologists from Children’s Hospital Colorado, Seattle Children’s Hospital, University of Michigan, and University of Virginia.

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 Launches Two New Studies

The Cerebral Palsy Research Network (CPRN) has launched two new studies in its Community Registry hosted at MyCP.org.  The first study, “Speech and Language Predictors of Participation for Children with Cerebral Palsy (CP),” is intended for parents or caregivers of children ages 4-17.  The principal investigator, Dr. Kristen Allison of Northeastern University, was awarded the CP NOW Research CP award in November 2019 in support of creating this study.  Dr. Allison hopes to enroll at least 100 participants which is conducted entirely online.  The second study, “Community views on cerebral palsy diagnosis,” was developed by Dr. Bhooma Aravamuthan of Washington University, to understand the meaning and the impact of different diagnoses related to CP have on families.  The survey is available to parents and caregivers for children and adults with CP 18 years and older.  Both studies can be taken by signing up for MyCP.org.

MyCerebralPalsy.org (MyCP)
Join MyCP!

The CPRN Community Registry captures data directly from members of the community through our web portal at MyCP.org.  More than 600 members of the community have signed up for MyCP. Community Registry studies are de-identified so there is no personally identifying information in the studies.  Many of the studies in the Community Registry are longitudinal so they track outcomes over a long time. These two new studies are single studies with no follow-on annual measures.  The speech and participation study does have potential compensation in the form of a drawing for a $100 Amazon gift card though most studies do not have similar incentive.  Your time participating in these studies helps CPRN advance research that would not be possible without your direct input.

A preview image linking to blog post ‘Webinar: Report from the Cerebral Palsy Registry’

Webinar: Report from the Cerebral Palsy Registry

The Cerebral Palsy Research Network (CPRN) announced its second webinar in its MyCP Webinar Series entitled a “Report from the CPRN Cerebral Palsy Registry” would be open to the public on Thursday, April 23 at 8 pm via Zoom.  Dr. Garey Noritz, a developmental pediatrician and the Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital, will present the initial findings from the CP registry which includes both children and adults.  This 20-minute presentation will be followed by an open Q&A with Dr. Noritz.

Dr. Noritz is the principal investigator for the CPRN CP Registry which gathers medical, surgical and outcome data from patients during clinical care.  The CPRN CP Registry is critical infrastructure to accelerate CP research and was created in response to the strategic plan for cerebral palsy issued by the National Institutes of Health following a workshop on the state-of-the-science and treatment in CP in late 2014.  This presentation has been crafted specifically for the CP community to understand CPRN’s focus on research to improve outcomes in CP.

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!

A preview of a bar graph linking to blog post ‘CPRN Abstracts Accepted for AACPDM Annual Meeting’

CPRN Abstracts Accepted for AACPDM Annual Meeting

The Cerebral Palsy Research Network (CPRN) received acceptances for all four abstracts that its investigators submitted to the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to be held on September 23-26, 2020 in New Orleans, Louisiana.  CPRN noted that it submitted half as many abstracts this year because four of the eight from last year are proceeding toward publication!  The annual AACPDM meeting is a great way for CPRN to disseminate its findings to the broader cerebral palsy provider and research community.

This year’s abstracts include:

  • A scientific presentation on the CPRN clinical cerebral registry by Garey Noritz, MD.
  • Two scientific presentations on adults with CP – one on health and wellbeing and the other on pain by Mary Gannotti, PT PhD.
  • A breakfast seminar on how to participate in registry-based research with CPRN by Paul Gross and Garey Noritz, MD.

These presentations, like last year, are powered by the growth in the CPRN clinical and community registries which follow people with CP over the long term.  Dr. Gannotti’s presentation will provide an interim report on adults from CPRN’s community registry hosted at MyCP.org. Dr. Noritz’s presentation will describe the characteristics of several thousand CP patients enrolled in the CPRN clinical registry from 12 sites including surgical interventions.  Dr. Noritz and Mr. Gross will present researchers with how they can tap into these two registries to generate new knowledge in CP. People interested in preliminary versions of these presentations can sign up for the MyCP webinar series where Dr. Noritz will be presenting a snapshot of the CPRN clinical registry on April 23, 2020.

CPRN Delivers eConsent Tool to Accelerate COVID-19 Research

The Cerebral Palsy Research Network (CPRN) delivered an innovative new eConsent tool to the University of Utah to help accelerate multiple COVID-19 research studies under development.  In addition to the core goals for eConsent to improve participants’ understanding of research studies, risks and benefits, eConsent provides additional safety and equality in research by supporting social distancing and the inclusion of rural populations in research.

CPRN’s eConsent tool was developed in conjunction with University of Utah’s Erin Rothwell, PhD whose NIH funded research on eConsent has demonstrated significant benefits to study participants over paper-based consent (HD082148).  CPRN principal investigator Michael Kruer, MD, from Phoenix Children’s Hospital, sought an eConsent solution for his recently funded cerebral palsy (CP) genetics research (NS106298). CPRN, Rothwell and Kruer partnered to expand Rothwell’s original mobile prototype to a browser and mobile device application for a wide variety of informed consent scenarios.

“We are excited that CPRN has been able to develop such a rich feature set of interactive features to improve participant comprehension within eConsent in such a timely manner,” said Dr. Rothwell, Associate Vice President for Research Integrity and Compliance for the University of Utah.  “Deploying eConsent at the University to support the demand for COVID-19 studies while keeping our patients and clinicians safe is of paramount importance during this pandemic.”

CPRN sees eConsent as an important building block in its mission to accelerate research for cerebral palsy.  Tools that increase the community’s understanding of research objectives while making the consent process more efficient and effective is important to conducting more research into CP and including more members of the community in the process.  CPRN will provide its eConsent platform to sites conducting research its network.