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!
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.
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.