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 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.”

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!