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.
