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!

CPRN Webinar: Learn how to leverage CPRN to increase your research funding potential

The Cerebral Palsy Research Network (CPRN) will be conducting a one-hour webinar entitled “How to partner with CPRN to conduct multi-center trials” on January 17, 2019 at 7 pm ET. The webinar will be open to the public with advance sign-up (see form below). We are excited to have Michael Kruer, MD, pediatric neurologist at Phoenix Children’s, present on how his genetics study effort partnered with CPRN to enhance subject recruitment, enable rich phenotypic data collection and to analyze resultant data for his recently approved NIH grant of $3MM.

The target audience is comprised of clinicians, therapists and clinical researchers seeking to accelerate and strengthen his/her CP research projects and quality improvement efforts. Attendees will be led through the process of proposing study concepts to CPRN for approval and development into full applications to funding agencies with CPRN support using Dr. Kruer’s recent successful application as an example. We will discuss the types of studies supported CPRN and resources available both within the CPRN Data Coordinating Center and the network sites more broadly. We will describe how studies are developed by PIs leveraging these network capabilities through to submission for funding and execution on success.

Reserve your spot now!
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Reflecting on 2018 and Planning for 2019

Happy New Year from all of us in the Cerebral Palsy Research Network (CPRN)! CPRN forged ahead in 2018 on the plans as laid out in the 2017 year-in-review blog post with numerous goals accomplished. The biggest highlights for the year included:

These milestones are all critical steps to advancing our mission to improve outcomes for people with cerebral palsy.

Building Momentum in 2019

We plan to build on these advances in 2019 starting in January with a webinar: How to Partner with CPRN to conduct Multi-center Trials on January 17 plus we have scheduled several abstract submissions to AACPDM for its annual meeting by January 31.

We also will continue to engage the broader community through a public webinar on the results of Research CP. This webinar will be linked with the launch of our community registry which will allow people with CP and their caregivers to actively participate in research through surveys on the web and mobile phones.

Our next face-to-face investigator meeting, hosted by Executive Committee member Dr. Ed Hurvitz, is planned for early May in Ann Arbor, Michigan. Several study analyses and manuscripts are planned for the year and an expanded presence for CPRN at AACPDM in Anaheim. Finally, we expect several more sites to join the network in 2019 and hence will be expanding our footprint and data collection for the clinical registry.

We would like to thank the investigators that volunteer their time to advance the work of CPRN for:

  • submitting protocols to their institutional review boards,
  • prodding information technology departments to implement the registry, and
  • encouraging their multi-discipline partners to participate in collecting the data in CPRN useable formats!

We also wish to thank our community advisors and the CP community for keeping us honest, staying engaged and spreading the word about the CPRN mission. We wish you all the best in 2019!

CPRN to Study Genetic Causes of Cerebral Palsy

Michael Kruer, MD

Michael Kruer, MD

The Cerebral Palsy Research Network (CPRN) is excited to announce that CPRN principal investigator Dr. Michael Kruer of Phoenix Children’s Hospital has been funded by the National Institute of Neurological Disorders and Stroke to study the genetic causes of cerebral palsy (CP). This public funding of an R01 grant represents a significant milestone for both Dr. Kruer and CPRN – a first for both the principal investigator and the network! R01s are the largest research project grants funded by the National Institutes of Health (NIH). It is also NIH’s first genetics study for CP!

Dr. Kruer’s application cites evidence that up to 30% of CP cases are related to genetics so this study has the potential to significantly increase our understanding of those genetic factors. This knowledge can then be used to better predict the evolution of an individual’s symptoms over time and assess a family’s risk of having additional children with CP. “We are thrilled to have the opportunity to partner with other CPRN investigators and the support of the NIH as we conduct these important studies,” says Kruer. “In time, genomic discoveries in CP will allow us to match currently available treatment tools to each patient better than ever before. We also believe that genomic findings may provide a window into how neurodevelopment goes awry in CP, facilitating the development of new treatments that target the underlying cause rather than treating symptoms.”

CPRN clinical registry sites will refer patients with unknown causes of CP to Dr. Kruer in Phoenix. Those patients will be enrolled in the study and receive a genetic sampling kit for their saliva. Dr. Kruer’s lab will perform the genomic analysis which will be connected with the phenotypic (observable human characteristics) analysis from the CPRN clinical registry to enable the study findings. This study will happen over five years.

The potential for future studies combining genomic analysis with the CPRN clinical registry is significant. NIH’s Precision Medicine initiative, which “aims to understand how a person’s genetics, environment, and lifestyle can help determine the best approach to prevent or treat disease,” is spurring the use of genetics to personalize treatments for what would achieve the best outcome for individuals. Dr. Kruer is already planning follow-on studies that will leverage this initial research into Precision Medicine types of studies for CP. If you or someone you know has an unknown cause of CP, it could be due to a genetic cause. Sign up for CPRN for alerts about the study to learn more.

Research CP Published!

Setting a Patient-Centered Research Agenda for Cerebral Palsy

Setting a Patient-Centered Research Agenda for Cerebral Palsy

The Cerebral Palsy Research Network (CPRN) is excited to have its first published research manuscript. Setting a Patient-Centered Research Agenda for Cerebral Palsy is available in Developmental Medicine and Child Neurology. And even better it is open to the public free-of-charge so that it is available to all in the CP community! Research CP, an initiative to set a patient-centered research agenda for cerebral palsy (CP), is a collaboration between CPRN and CP NOW, a nonprofit focused on education and research for people and families living with CP. Research CP started in March 2017 with a series of educational webinars, online polls to establish a research agenda and culminated in a face-to-face workshop in Chicago, Illinois in June 2017.

With broad participation from the extended community of people with CP, caregivers of children and adults with CP, the medical provider community, and community advocates, Research CP sought to establish a deep dialogue about what questions were most pressing that could be addressed through high-quality biomedical research. The initiative produced a list of 16 top research ideas and a wealth of other important criteria for CPRN and other clinical researchers to prioritize for future research studies. The 16 research ideas fell into four high level categories of research interest:

  • Comparative Effectiveness of Interventions
  • Exercise, Physical Activity and Chronic Disease Risk
  • Understanding Aging
  • Other topics including Pain, Neuroplasticity and Quality of Life.

In addition to the publication of these research areas for CP researchers to consider, several other important steps have been taken by CPRN to ensure the priorities of Research CP are realized to benefit people with CP. CPRN has integrated the Research CP agenda into its core criteria for evaluating research projects and created a community advisory committee to continue the dialogue about these research ideas. It plans to facilitate an ongoing dialogue with the community about these research projects.

CPRN and CP NOW appreciate the support of several organizations in making this initiative possible including an award from the Patient-Centered Research Outcomes Institute, additional funding support from the Cerebral Palsy Alliance Research Foundation and the support for dissemination of these results from the American Academy for Cerebral Palsy and Developmental Medicine.

Riley Children’s Hospital and Indiana University Join CPRN

The Cerebral Palsy Research Network (CPRN) welcomes Dr. Jeffrey Raskin, a pediatric neurosurgeon at Riley Children’s Hospital and an Assistant Professor of Neurosurgery at Indiana University to the network. Based in Indianapolis Indiana, Riley Children’s Hospital will expand the Midwest footprint of CPRN which will further accelerate research opportunities for improving outcomes for people with cerebral palsy (CP).

The addition of Dr. Raskin to the CPRN principal investigator team demonstrates an important avenue for growth for CPRN. “I learned about CPRN from a neurosurgical colleague from the University of Utah,” said Dr. Raskin. “Participating in multi-center, multi-discipline research supported by CPRN allows our Riley movement disorder program to influence and be influenced by collaborative research, ultimately helping people with CP.” The nature of CP treatment encourages clinician researchers from medical, surgical and therapeutic disciplines to seek research network infrastructure to facilitate their study interests.

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.