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!

Watch the New Webinar on How to Partner with CPRN

The Cerebral Palsy Research Network (CPRN) released a new webinar entitled “How to partner with CPRN to conduct multi-center research” today. The original webinar was conducted in January 2019 by CPRN Chairman Paul Gross, CPRN Data Coordinating Center Principal Investigator Jacob Kean, PhD, and CPRN Principal Investigator Michael Kruer, MD.  The webinar was developed to educate researchers on the capabilities of CPRN to conduct multi-center research and how a researcher can partner with CPRN to leverage its capabilities.  The benefits to the researchers include: 

  1. Strengthen grant applications with CPRN preliminary data
  2. Accelerate research through established network sites
  3. Leverage integrated patient advisors.

“We are very excited to see how our open science approach has ignited new collaborations in research for cerebral palsy,” said CPRN Chairman Paul Gross.  “We expect five or more centers to join CPRN before the year’s end which would bring the total to 29 centers. This webinar and an upcoming Request for Applications opens the door for new types of research partnerships.”

The webinar’s release, here and on YouTube, is very timely as CPRN prepares its first Request for Applications in partnership with CPNOW, a foundation focused on community education and research funding and our community engagement partner.  The webinar describes the different types of studies that can be conducted with CPRN and the data management and analysis resources that it provides for investigators. 

Originally delivered as an instructional course at the American Academy for Cerebral Palsy and Development Medicine in the Fall of 2018, the webinar format makes the content accessible to everyone.  In the webinar, Dr. Kruer details how he partnered with CPRN to go to secure a multi-million-dollar grant from NIH for his CP genetics study.  We hope you watch and we welcome your feedback on how to make partnering with CPRN accessible and clear.

CPRN Streamlines Its Cerebral Palsy Registry Elements

The Cerebral Palsy Research Network (CPRN) has posted an updated version of its Cerebral Palsy Registry Elements on its website.  The CPRN Clinical Registry is a database of patient characteristics, interventions and outcomes for people with cerebral palsy (CP) treated at a CPRN site.  The CPRN Registry is built to accelerate the pace of research for CP in the United States.  It was established in conjunction with the strategic plan for cerebral palsy developed by the National Institutes of Health. The cerebral palsy registry elements were originally developed by a broad panel of CP experts that treat people with CP and conduct clinical research.

The updated version of the CPRN Registry Elements (RE) was created to facilitate the data transfer process from participating sites gathering data in their institution’s electronic medical records (EMR) to the CPRN Data Coordinating Center at the University of Utah Department of Population Health Sciences.  The revised RE:

  • Simplifies the number of elements found in the original specification,
  • Provides data definition for all elements,
  • Includes mappings to elements in the Epic EMR,
  • Enables searching so that researchers can easily find elements that are collected in the registry.

The CPRN Registry is currently approved for data collection at 20 sites in the network with active data collection started at 12 sites.  Other sites are in the process of preparing to collect data through their respective EMR systems.  The CPRN Cerebral Palsy Registry currently has more than 2,000 unique patients and is being used to support a broad array of research initiatives for CP.  Patient data is stored securely at the University of Utah’s Center for High Performance Computing. 

The streamlined CPRN Registry Elements are a critical milestone in getting the data we are collecting at our sites into the CPRN Registry in Utah so it can be used to support our manyfold research concepts.

CPRN Advances Multiple Study Concepts

Overview sessions were followed by small group working meetings.

The Cerebral Palsy Research Network (CPRN) advanced 12 studies during its two-day investigators’ meeting in Ann Arbor, Michigan last week.  The meeting enabled study leaders to engage in deep discussions about study concepts, designs and execution with multiple medical discipline leaders across the network.  Twenty-seven sites throughout the US and Canada were represented by the 36 attendees at the meeting.  The format of the meeting, a series of small group breakouts and informational sessions, was a key factor in the value of the time spent working through important study decisions and directions.

Laurie Glader, MD, Boston Children’s Hospital

“This meeting was truly inspirational,” said Laurie Glader, MD, a pediatrician from Boston Children’s Hospital. “It allowed clinicians and researchers to bring their passions about advancing research for the CP community together. Ideas from multiple perspectives were explored, reflecting the multi-disciplinary nature of CPRN along with the breadth and depth of what is possible through the network.”

The research that was discussed directly addressed ideas from the Research CP patient-centered agenda that was co-developed by CPRN and CPNOW.  Study concepts under development include:

  • Comparative effectiveness of medical and surgical spasticity treatments
  • The effect of physical therapy dosage on outcomes after orthopedic surgery
  • The role of body composition and strength in the long-term health of adults with CP
  • Health care transition
  • Shared decision making prior to surgical interventions.

Existing studies that are enrolling or preparing to enroll patients were another substantive topic including:

Small group breakouts enabled deep dives in study aims and implementation.

“I left this meeting knowing that the CP community’s research needs will finally be addressed in a comprehensive, strategic and meaningful way,” said Michele Shusterman, President of CP NOW and CPRN’s director of community engagement.  “The commitment and passion of this group’s energy was palpable and inspiring. It won’t be long now until the answers to some of our most pressing concerns will start rolling in and lead to better care and treatment for people with CP. “ 

Investigators leading the efforts discussed will use the learning from this meeting to tune their study aims and implementations. The collaborations at the CPRN investigator meeting enable months of work to be completed in just a few days!

CPRN Investigators Convene at University of Michigan

The Cerebral Palsy Research Network (CPRN) investigator committee members arrived in Ann Arbor on Wednesday, May 1, 2019 in preparation for the annual CPRN Investigator meeting. Thirty-five research investigators, including four clinicians from new “candidate” sites, will meet for two days on the University of Michigan campus to advance its funded studies and new concepts.  This gathering allows the study groups within CPRN to have focused time to make rapid progress on their study development by finalizing data collection forms, streamlining enrollment, resolving outstanding research implementation questions, and conceiving of new study ideas for cerebral palsy research.

The CPRN investigator meeting kicked off Thursday with an update on the CPRN Clinical Registry and overall network progress.  Study group leaders then provided insight into the status of their study and the important advances to make during the meeting.  Most of the meeting is conducted in smaller breakout groups and world café style meeting sessions to advance the studies and new concepts.  CPRN’s goal for the meeting is to ensure the success of its funded research and to accelerate new and existing research concepts toward grant opportunities.

“We are excited to host the 2nd annual CPRN Investigator meeting here at University of Michigan,” said Ed Hurvitz, MD, Chair of Rehabilitation Medicine and CPRN executive committee member.  “We believe that the growth and success of CPRN is fundamental to improving outcomes for people with cerebral palsy.”

Be Heard! Join MyCerebralPalsy.org

MyCerebralPalsy.org (MyCP)

MyCerebralPalsy.org (MyCP)

The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org (MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:

  1. the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
  2. the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
  3. Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.

The CPRN Community Registry allows members of the community to participate in confidential surveys about their experience with CP. This information is used by CPRN researchers to understand the natural history of CP to generate new knowledge for future research and enhancements to services for people with CP. It also allows CPRN to find members of the community who want to participate in clinical trials or other studies. All information gathered in the CPRN Community Registry is stored securely at the University of Utah under the guidance of the University of Utah ethics board (institutional review board).

The MyCP forum provides member to member discussions about important research topics such as “what is the most pressing thing to study in CP?” MyCP members includes people in the community with CP, their caregivers, advocates, clinicians and researchers. All identities are protected and the discussions are not accessible by non-members or search engines. MyCP discussions help direct the course of research at CPRN.

CPRN Launches Study of Adult Health and Pain

Adults with Cerebral Palsy

CPRN launched study of adults with CP

The Cerebral Palsy Research Network (CPRN) launched its first study of adults with cerebral palsy (CP) today. The study is open to anyone with CP that is 18-years-old or older and is available on the web at https://mycerebralpalsy.org. The study consists of a series of surveys about an individual’s health, motor abilities, social and emotional health, and experience with chronic pain. It should take approximately 20 minutes to complete. The study of adults with CP was a key priority that was identified in the National Institutes of Health Strategic Plan for Cerebral Palsy (link) that was released in October 2017.

Mary Gannotti, PT, PhD

Mary Gannotti, PT, PhD, professor of Physical Therapy at University of Hartford

“The quickest way to get information about the issues adults with cerebral palsy are facing with aging, including functional changes, stigma, pain impact and pain treatments that work, is to ask adults with cerebral palsy,” said Mary Gannotti, PT, PhD, and co-chair of the CPRN Adult Study Panel. “We are thrilled to have MyCerebralpasly.org launch these surveys!” she added, “and we hope to people post their thoughts or comments about these topics on the website comments page!”

The adult study was designed by a panel of expert clinician researchers who treat adults with CP. The CPRN Community Advisory Committee provided input into the development of these studies. The Research CP initiative ranked the study of adults with CP as the highest priority research area and we are excited to launch this foundational study to address the needs of the community of people with CP.

CPRN To Expand Presence at Combined AACPDM and IAACD Meeting

The Cerebral Palsy Research Network (CPRN) investigators will be presenting in eight sessions this fall at the combined American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 73rd Annual and the International Alliance of Academies of Childhood Disabilities (IAACD) 2nd Triannual meeting. All of CPRN’s new abstracts have been accepted including one scientific presentation, five posters and one breakfast seminar. The eighth presentation is a focused symposium in which CPRN will contribute to a panel discussion of CP registries across the world.

Six of our presentations are built on data from our registry including:

  1. Garey Noritz, MD, “Report from the Cerebral Palsy Research Network- 2019”
  2. Adam Ostendorf, MD, “Epilepsy Prevalence, Treatment and Intractability in the Cerebral Palsy Research Network Cohort”
  3. Jeffrey Leonard, MD, “A Descriptive Study of Surgical Interventions for Cerebral Palsy Patients in the Cerebral Palsy Research Network Registry”
  4. Robert Bollo, MD, “A prospective, multi-center initiative to reduce intrathecal baclofen pump surgical site infection: a Cerebral Palsy Research Network quality improvement project”
  5. Mary Gannotti, PT, PhD, “Pain experiences among aging adults with cerebral palsy: leveraging the Cerebral Palsy Research Network Community Registry for Patient Reported Outcomes”
  6. Paul Gross and Mary Gannotti, “How to engage patients in research and garner patient-reported outcomes using the CPRN Community Registry.”

As mentioned in the blog post from February 6, 2019, we believe the CPRN registry is gaining traction to advance research in CP. We are honored to have the recognition of the scientific program committee of AACPDM and IAACD. CPRN congratulates all the investigators who will be presenting their scientific efforts and thanks all the network sites for the many contributions to the registry and CPRN’s scientific collaborations.

CPRN Registry Propels Multiple Abstract Submissions to AACPDM

On January 31, 2019, the Cerebral Palsy Research Network (CPRN) submitted eight abstracts to the American Academy for Cerebral Palsy and Developmental Medicine for its annual meeting. The growth and richness of the CPRN registries underpinned seven of the submissions including:

  1. an analysis on the surgical interventions captured in our CP registry;
  2. a descriptive analysis of epilepsy in the CP population of CPRN;
  3. and an updated descriptive analysis of our clinical registry findings;
  4. the results from our first year of our quality improvement protocol for intrathecal baclofen pumps;
  5. a demonstration poster of the CPRN community registry as a tool for cross sectional and longitudinal study of adult pain and physical, social and emotional wellbeing;
  6. a breakfast seminar on how to take advantage of our community registry;
  7. and an instruction course describing how investigators can partner with CPRN to develop studies leveraging our registries for preliminary data.

An eighth abstract is focused on the results of a qualitative study of practice variation for spasticity management of children with spastic diplegia. In addition to these submissions, the CPRN registry will be represented in a pre-conference symposium. As CPRN approaches its fourth year since its founding, its clinical CP registry has become a significant asset for research. CPRN investigators hope that the registry will be the source of numerous discoveries and improved outcomes for people with CP.

NIH Announces Funding Opportunity Ideal for Cerebral Palsy

NINDS Funding Opportunity for Observational Trials

NINDS Funding Opportunity for Observational Trials

The Cerebral Palsy Research Network (CPRN) congratulates the National Institute of Neurological Disorders and Stroke (NINDS), one of the National Institutes of Health (NIH), on its new funding opportunity announcement for prospective observational trials. CPRN was borne out of an NIH meeting entitled the “State-of-the-Science and Treatment in Cerebral Palsy” in November 2014. That seminal meeting for cerebral palsy spurred several important efforts to advance the state of both clinical and basic science research. One of the main themes of the meeting was the need for more comparative effectiveness research using more “real world” methodologies, such as Practice Based Evidence described by Dr. Susan Horn, a professor at the University of Utah, than are typically supported by NIH granting mechanisms. Many aspects of CP require this type of study design to answer many pressing questions for the CP community.

The new funding opportunity entitled “Comparative Effectiveness Research in Clinical Neurosciences” is specifically designed to support the type of observational studies that CPRN was established to conduct. “Every year, nearly 100 million Americans and their loved ones have to cope with neurological disorders,” said Walter J. Koroshetz, M.D., director at the NIH’s National Institute of Neurological Disorders and Stroke. “We hope that this ‘real world’ approach to clinical studies will help guide patients, their caregivers, and doctors as they search for the most effective treatments for their particular disease.” The initial NIH meeting, numerous follow-up discussions and consistent Congressional Report language initiated by Reaching for the Stars were critical keys to making this funding announcement happen. CPRN plans to submit a study to NINDS using this funding mechanism.

CPRN Epilepsy Study Group’s First Meeting a Success

CPRN Epilepsy group

The epilepsy study group (pictured below; left to right) includes Dr. Erin Fidak-Romanowski (University of Michigan), Ashley Falke (NCH research coordinator), Dr. Ostendorf (NCH), Dr. Howard Goodkin (University of Virginia), Dr. Erica Axeen (University of Virginia) and Dr. Krista Eschbach (Children’s Hospital Colorado)

Did you know that there are a lot of co-morbidities with cerebral palsy? One is epilepsy. The Cerebral Palsy Research Network’s (CPRN) epilepsy study group’s first meeting occurred in New Orleans during the American Epilepsy Society meeting in December 2018. Our group of seizure experts is supported by a generous grant from the Pediatric Epilepsy Research Foundation (PERF).

Seizures occur in around half of children with cerebral palsy, yet little is known regarding the best way to treat both the seizures and CP . This newly-formed study section aims to build on the foundation of the CPRN through enhancing the information collected during clinic visits. This information will be used to identify risk factors and successful treatment for seizures. The study section will use this information to develop the next generation of treatment options for children both conditions.

At this meeting, the group discussed the current information collection tools and how best to use them at each center within the CPRN. They planned next steps, including measuring the impact of seizures and CP on patient and family lives and disseminating cutting edge information rapidly throughout the network. The study group members will continue their collaboration through scheduled phone calls and meet again in person in the Spring.

Dr. Adam Ostendorf, a pediatric epileptologist at Nationwide Children’s Hospital (NCH), leads the investigator team and feels tremendous momentum moving forward. “We had a fantastic meeting this year. The discussion was energized by the clear passion of the members. Contributions were forward thinking and demonstrated the potential for the CPRN to change how we care for children with seizures and CP.”