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!

First Investigator Meeting Aims to Fill Study Gaps

Ralph Nitkin, PhD, Deputy Director of NCMRR

Ralph Nitkin, PhD, Deputy Director of NCMRR

The Cerebral Palsy Research Network (CPRN) Investigator Committee held its first in-person meeting on May 31 and June 1, 2018 in Houston, Texas. The goal of the meeting was to generate new study ideas that address the gaps in the Research CP agenda that was established in June 2017. Investigators and three members of our Community Advisory Committee spent the first day reviewing the progress CPRN’s registry development and new and existing lines of study. Community members shared their personal experiences with CP to emphasize the importance of the network’s mission.

The second day was spent in breakout groups to brainstorm new study interest in areas that are most important to the community. Breakout groups worked on major themes of the Research CP agenda including:

  • Comparative effectiveness of interventions;
  • Physical activity and exercise along with understanding aging;
  • Medical decision making;
  • Coordinating care across multiple disciplines and institutions.

Multiple ideas for studies were proposed in each of these groups and CPRN is developing new study groups to provide leadership to pursue these research opportunities.

Some the CPRN investigators at the Armadillo Palace

Some the CPRN investigators at the Armadillo Palace

Rich Stevenson and Mary Gannotti v. the good guys!

Rich Stevenson and Mary Gannotti v. the good guys!

In addition to focusing on the generation of new studies, the meeting was intended to provide a face-to-face networking opportunity for researchers and community members. A group dinner at the Armadillo Palace gave participants a great chance to eat some Texas BBQ, unwind and connect on a variety of personal and professional fronts. The majority of the participants felt that the meeting exceeded their expectations. One investigator commented:

“We should do this annually. It’s critical for continued engagement. Many of those at the meeting are the “front line workers” who understand the critical research questions in patients with CP, and without active engagement spurred by meetings like this, people with busy schedules tend to invest their time elsewhere.”

Community Advisors Jennifer Lyman, Nancy Yagodich and Lisa Diller

The community advisors valued the meeting as well:

“I am honored to have had the opportunity to share our story, our hopes and our dreams with the driven, dedicated and passionate investigative team that makes up CPRN. As a parent of a child with complex CP, it is heartwarming to see firsthand CPRN’s commitment to research that will improve outcomes, participation and the quality of life of all those with CP.” – Jennifer Lyman – mother of a child with CP and coordinator of the CP Collaborative.

“I have found the investigator meeting to be invaluable. It has ignited a renewed hope and the assurance that meaningful, full-scale clinical research studies will be conducted as evidenced through the dedication and collaborative efforts of the investigators of CPRN. Both hope and knowledge are necessary to build endurance, purpose, and resilience as the day-to-day challenges of CP are met.” – Nancy Yagodich – adult who has CP.

“It was exciting to hear all the steps forward that CPRN has taken since our inaugural meeting in Chicago last year. Hearing updates about the registry and progress towards the “top 20”, status of current studies, hearing from several community stakeholders, and taking part in “next steps” were several highlights of the meeting.” – Lisa Diller – PT and mother of a child with CP.

CPRN is looking forward to the next steps of advancing the studies discussed and forming the study groups around the new concepts that were generated. Stay tuned on our progress!

CPRN Holds First Annual Investigator Meeting

The Cerebral Palsy Research Network (CPRN) is converging on Houston, TX this week for its first multi-day investigator meeting at Texas Children’s Hospital. The goal of the meeting is to accelerate the number of research concepts being developed into full-scale studies that address the priorities set by its Research CP agenda setting process conducted in 2017. Thirty investigators (investigators are typically medical professionals or scientists) and three community advocates including two parents of children with CP and an adult with CP, will spend the next two days discussing network and registry progress, new study concepts and gaps that need to be filled in our patient-centered research agenda. The CPRN investigators, along with a senior official from the National Center for Medical Rehabilitation Research (NCMRR), Deputy Director Ralph Nitkin, PhD, will examine how CPRN research plans fit with the National Institutes of Health (NIH) strategic plan for cerebral palsy (CP). This is an important step to involve NIH.

CPRN was founded in 2015 to address priorities that came from an NIH workshop on CP the prior year. CPRN facilitates its research through virtual meetings of investigators from more than 20 centers across the U.S. and Canada. Investigators have been meeting via web conferencing to advance the CPRN clinical registry and several lines of study in CP. Last year, CPRN, in partnership with CP NOW, received funding from the Patient-Centered Outcomes Research Institute to organize a patient-centered research agenda so that research efforts in CP would be directed to questions that the community found most pressing and most important. CPRN already has five study lines funded and being developed, three additional studies awaiting funding decisions and five new concepts planned for review at the meeting. CPRN investigators are excited by the research momentum and the potential for changing outcomes for people with CP.

CPRN thanks Aloysia Schwabe, MD and Texas Children’s Hospital for hosting our inaugural investigator meeting!

CPRN Receives Funding for Research in Epilepsy and CP

The Cerebral Palsy Research Network (CPRN) is proud to announce funding for “Enhancing a Multidisciplinary Research Network for Research and Quality in Epilepsy and Cerebral Palsy” from the Pediatric Epilepsy Research Foundation (PERF) in conjunction with Nationwide Children’s Hospital (NCH). Principal Investigator Adam Ostendorf, MD, pediatric neurologist at NCH, partnered with CPRN to submit this grant application. The award will provide $200,000 in funding to add an epilepsy study group to CPRN, define important data to collect and enable research and quality improvement initiatives for treating children with cerebral palsy (CP) and epilepsy.

This following introduction to the grant from our application provides a great summary of the importance of this effort.

The consequences of seizures and their treatment exert influence on concurrent conditions and are best studied collectively. Epilepsy occurs in nearly half of individuals with cerebral palsy (CP), is difficult to treat, and negatively impacts patient and family quality of life. However, seizure-focused therapies may worsen movement disorders, bone health, nutrition or behavior. A knowledge gap currently exists despite the extensive overlap of these common neurological disorders and is perpetuated by a lack of infrastructure capable of addressing it. Specifically, we do not know the best therapies to control seizures while minimizing side effects. Furthermore, quality measures play an increasingly large role in neurology practice, yet their effects and implementation are not understood. A research infrastructure capable of studying epilepsy management and outcomes in patients with CP is critical to develop more effective therapeutic approaches which limit adverse effects and provide quality care across centers.

Michele Shusterman, CPRN’s Community Engagement Director and author of CP Daily Living, wrote a letter of support for this grant application that gives a glimpse into the importance of this research for the community. Her daughter Maya, whom she writes about on her blog, is pictured in this post.

As a parent of a child with both conditions, my child’s struggle with epilepsy has brought me and my husband the most acute grief and worry. The symptoms associated with her CP diagnosis are already difficult for us to negotiate and adding epilepsy to the list makes a complicated set of medical conditions difficult to tease apart and address with any kind of remote clarity. This is especially true when it comes to identifying appropriate medications and treatments that won’t exacerbate behavioral, learning, digestive and sleep disorders that are already present. Epilepsy also adds additional social and emotional barriers that often further isolate families and impacts their quality of life.
It is therefore imperative that every clinician treating people with CP is offering the best, most current treatments available and those that are best suited to balance the unique concerns of people with CP.

CPRN would like to thank our advisor Deborah Hirtz, MD, for introducing us to this grant opportunity and PERF for funding this study of epilepsy in the context of children with CP.

NIH Launches “All of Us” Research Initiative

In March, CPRN posted about its participation in the National Institutes of Health (NIH) research priority setting for the new “All of Us” research program. On Monday, NIH formally launched this program and is now enrolling people in the United States. This incredibly ambitious study will examine the DNA and track the health of 1,000,000 Americans for 10 or more years. It has the potential to create new learning about genetics and other factors that can influence disease and outcomes across the lifespan. It is free to enroll and will provide you with valuable information based on the data the study collects.

The study is open to anyone 18 years of age or older. For people with cerebral palsy, the “All of Us” research has the potential to provide invaluable learning about the long term outcomes in CP in comparison to the rest of the US population. In CPRN’s recently completed Research CP project, longitudinal studies were deemed to be one of the most important constructs for research into CP. While “All of Us” is not specifically focused on CP, the planned outcome measures could uncover important findings about the health impacts of having CP. CPRN will continue to follow this study and look for how we can collaborate with NIH to pursue our research agenda. We encourage you to visit the All of Us website to learn more about participating in this important research endeavor.

CPRN Abstracts Accepted for AACPDM Meeting

The Cerebral Palsy Research Network (CPRN) is excited to announce that three of its abstracts have been accepted for the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Cincinnati, Ohio in October 2018. These opportunities to present CPRN’s efforts to AACPDM members is an important validation of our mission to accelerate clinical research for cerebral palsy.

The abstracts include:

  1. an analysis of the CPRN clinical registry presented as a scientific paper;
  2. an instructional course on conducting multi-center research with CPRN presented;
  3. a breakfast seminar on Research CP – our community-based research prioritization effort.

Each of these presentations represent different aspects of the work of CPRN – the creation of a CP registry in the U.S., the capability to conduct multi-center research and the research priorities that will guide work and collaboration. The acceptance of these abstracts demonstrates the multi-faceted interests of the CP research and provider community in working with CPRN. Having announced that our network is open for collaboration on research projects and open for sites to join, interest in CPRN has grown significantly over the last year with several new sites joining. CPRN also plans to hold a side meeting at AACPDM for new sites interested in joining the network.

NIH One-Million Person Study to Include People with Cerebral Palsy

The National Institutes of Health (NIH) has initiated a 1,000,000-person study called “All of Us” to implement its precision medicine initiative which enables researchers to develop therapies based on the unique characteristics of a patient’s genetics. This week, CPRN chairman Paul Gross, represented the needs of people with cerebral palsy at NIH’s research priority setting meeting in Bethesda, MD. “All of Us” has been designed to answer a multitude of health-related questions in the population.

In the Fall of 2016, the US Congress passed the “21st Century Cures Act.” The Energy and Commerce Committee defines this act as follows:

The 21st Century Cures Act (P.L. 114-146) accelerates the discovery, development, and delivery new cures and treatments. This game-changing law brings our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones, and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.

“All of Us” will soon launch and begin enrolling 1,000,000 people from across the United States. Participants will have an initial clinical examine and contribute bio-specimens such as blood that can be used to create a genome wide association study. The genome sequence, the participant’s electronic medical record and self-reported surveys will be combined to create a unique study database that can answer critical questions of what treatments will work for which patients. The study is designed to be longitudinal (a study over time) so that it can answer questions about outcome and quality of life that are not typically able to be studied with traditional research paradigms.

Gross and others were able to contribute “use cases” — study questions and required data elements for collection – that were targeted specifically at long term outcomes in CP. These use cases augment the CPRN registry and other studies CPRN is planning by providing the potential for genomic data for patients in the CPRN registry. We will provide information about how you can enroll when the “All of Us” study is launched later this spring.

CPRN Accelerates Research Submissions

The Cerebral Palsy Research Network (CPRN) is excited to announce that six abstracts for breakfast seminars, scientific papers and an instructional course were submitted this week to the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) for its annual meeting. These research submissions are evidence of the growing body of work from the network and CPRN’s readiness to engage the cerebral palsy (CP) provider and research community in opportunities to collaborate. Here is the submissions’ docket :

Scientific papers:

  • Research CP, our initiative to set a patient-centered research agenda for CP, that was completed in June 2017;
  • An update on our clinical registry which has doubled in size (now greater than 1,500 patients) since our preliminary report last year;

Breakfast seminars:

  • The benefits of joining CPRN to educate investigators on the requirements to join and the impact on a site’s CP practice and patient population;
  • Research CP to share the results of its initiative with the CP research community;
  • How to conduct quality improvement with CPRN as demonstrated by our first protocol for reducing infections for intrathecal baclofen pumps;

Instructional course:

  • Conducting multi-center clinical research with CPRN which will lead investigators through the steps to propose new research to CPRN to strengthen applications, obtain funding and leverage the Common Data Elements that have been defined by the National Institute of Neurological Disorders and Stroke and AACPDM.

CPRN plans to showcase its research platform to other professional societies including the American Academy of Physical Medicine and Rehabilitation and the American Society of Pediatric Neurosurgeons. We believe these presentation opportunities will increase interest, participation and research results for the extended CP community including providers and people and families with CP. Please let us know if you have any questions!

The Year in Review and Plans for the Future

The Cerebral Palsy Research Network (CPRN) made significant progress toward its vision of a multi-center collaborative effort to improve outcomes for people with cerebral palsy through high quality research and quality initiatives. It was funded for the first project at the start of the year through an award from the Patient-Centered Outcomes Research Institute (PCORI) to set a patient-centered research agenda for CP – Research CP. This project brought the extended CP community (people with CP, caregivers, clinicians, researchers and advocates) together to have a deep dialogue about what research is most important to the community. We have just submitted the manuscript about Research CP to Developmental Medicine and Child Neurology and hope it will be well received by the editors. Plus, we have invited a group of parents to join the adults on our Community Advisory Committee to make sure that our work is informed and influenced by all the needs of the CP community.

CPRN also saw significant progress in the expansion of its clinical registry from one site to six sites demonstrating our ability collect data both directly from the electronic medical record as well as using “chart abstraction”, i.e., where a clinical research assistant fills in forms by reviewing the medical record. With this expansion, the registry exceeded 1,100 patients enrolled putting it on a growth trajectory to be a significant factor in future CP research. Several other sites are making progress on the implementation of their Epic electronic medical record forms for CPRN which should greatly increase patient enrollment in 2018.

In addition to the registry, CPRN launched its first quality improvement protocol for intrathecal baclofen pumps led by Dr. Rob Bollo of Primary Children’s Hospital. Several clinical studies are in development or seeking funding including:

  • a genetics study led by Dr. Michael Kruer of Phoenix Children’s Hospital,
  • a supported mobility study led by Dr. Kristie Bjornson of Seattle Children’s Hospital,
  • a CP and epilepsy study by Dr. Adam Ostendorf of Nationwide Children’s Hospital,
  • surgical disparities in CP by Dr. Kirk Dabney of A.I. duPont and
  • spasticity management for diplegics currently led by CPRN chair Paul Gross.

In addition to this research activity, CPRN completed significant components of it infrastructure to enable it to grow, support new studies and produce quality research and manuscripts. The creation of the CPRN Standard Operating Procedures has documented how sites can join CPRN, leverage its research infrastructure to propose new multi-center studies, and develop more robust research through peer-reviewed study designs and manuscripts.

With this progress, CPRN educated critical audiences – most notably the American Academy for Cerebral Palsy and Developmental Medicine membership and numerous directors at the National Institutes of Health – about the opportunity to transform CP research. CPRN would like to thank all the dedicated clinicians, therapists and staff at all the sites for their efforts in making CPRN thrive. In addition, we thank the entire CP community who has championed CPRN and advocated for improved research, treatment and outcomes. We look forward to continued engagement of the community and study progress for 2018.

CPRN Prepares Its First Publication

The Cerebral Palsy Research Network (CPRN) delivered its first article to its newly formed Manuscript Review Subcommittee in preparation for submission to a leading neurology journal. The subcommittee, chaired by Dr. Jeffrey Leonard, chief of neurosurgery at Nationwide Children’s Hospital, is a multi-discipline group of clinicians, researchers in and advisors to CPRN who provide editorial oversight for CPRN publications. This group is intended to ensure that CPRN publications are of the highest quality and move through journal editorial processes more quickly.

CPRN’s first manuscript describes the process and results from the Research CP initiative that CPRN conducted in partnership with CP NOW. Research CP brought members of the CP community together with clinicians and researchers to set a patient-centered research agenda for CP. CPRN plans to use the results of the Research CP initiative to prioritize its future research endeavors.

In addition to Dr. Leonard’s leadership, the Manuscript Review Subcommittee includes:

  • Diane Damiano, PT, PhD from the NIH Clinical Center
  • Mary Gannotti, PT, PhD from University of Hartford
  • Susan Horn, PhD from the University of Utah
  • Ed Hurvitz, MD from University of Michigan Medical Center
  • Jacob Kean, PhD from the University of Utah
  • Michael Kruer, MD from Phoenix Children’s Hospital (Vice Chair)
  • Jason Rhodes, MD from Colorado Children’s Hospital
  • Brandon Rocque, MD from Children’s of Alabama
  • Christine Thorogood, MD from University of Florida Jacksonville
A preview image of a shiny emerald-green button stating ‘join’ linking to blog post ‘Join CPRN’

Join CPRN

The Cerebral Palsy Research Network (CPRN) posted a webinar entitled “How to Join CPRN” today. This 20-minute webinar features CPRN Chairman Paul Gross narrating a slide presentation that he delivered at a recent annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Montreal. The webinar takes prospective sites through a brief update on the founding and status of CPRN and then walks through the steps necessary to get the CPRN Clinical Registry up and running and how to formally join the network.

CPRN recently completed its Standard Operating Procedures (SOPs) that detail how investigators can apply to conduct their research with CPRN. The SOPs also describe the approval process for adding new sites to CPRN. This webinar will provide the fundamental background necessary to determine if joining CPRN is of interest to you and your institution for conducting research. The core difference between applying to conduct a study through CPRN and joining the network is the implementation of the CPRN Clinical Registry and ongoing collaboration for your institution. CPRN members are expected to implement the CPRN Registry at their institution and collaborate with other members of CPRN to plan and conduct multi-center studies and quality improvement initiatives.