The Pediatric Epilepsy Research Foundation Grant (PERF) has awarded Madison Berl, Ph.D., neuropsychologist at Children’s National Hospital, the 2020 PERF award for Infrastructure/Registry Research. The funds will support her work on researching neuropsychological outcomes of children being considered for pediatric epilepsy surgery.
This grant, which provides $200,000 of research funding, will allow Dr. Berl to systematically collect data outcomes and create robust prediction models that are critical to achieving precision medicine that allows for selecting the most effective surgical treatment for an individual child.
“While seizures are a critical outcome, there is increasing recognition that outcomes beyond seizure control is critical to children and their families when evaluating and treating the impact of epilepsy and its treatments,” said Dr. Berl.
Guidelines and consensus statements related to pediatric epilepsy surgery are uniformly lacking high quality published outcome data to support clinical decisions that impact likelihood of seizure freedom and optimizing outcomes beyond seizures (e.g., neuropsychological functioning, quality of life, improved sleep). Despite recognition of the need for standardized collection of data on a multi-institutional basis, the efforts that exist are limited in scope.
Moreover, as new techniques – such as laser ablation and brain stimulation – are approved for pediatric patients, there is little information available to determine which children will benefit from which intervention.
“This project fundamentally is a multi-site registry for epilepsy surgery outcomes,” Dr. Berl added.
“However, this type of infrastructure also fosters growth and active collaboration within a network of pediatric epilepsy clinicians. I am excited because if successful, this will be the start of long-term collaborative effort.”