New epilepsy surgery studies show power of collaborative research

Innovative Care, Neuroscience Research | May 4, 2023 | Cook Children's Neurosciences

M. Scott Perry, M.D., Head of Neurosciences at the Jane and John Justin Institute for Mind Health, recently co-authored two manuscripts on epilepsy surgery from the Epilepsy Surgery Database Project – a research study initiated by Dr. Perry as part of his Endowed Chair Program from Cook Children’s. The study is part of his work with the Pediatric Epilepsy Research Consortium’s (PERC) Surgery Interest Group, that he founded in 2017. The mission of PERC is to provide a network and infrastructure to facilitate collegial, collaborative, practice-changing research in pediatric epilepsy. Cook Children’s was an early member of this consortium, now over 60 institutions strong and continues to be an active participant across multiple workgroups beyond epilepsy surgery.

Soon after forming the surgery interest group, Dr. Perry initiated the Epilepsy Surgery Database Project with aim to collect common data on all children referred for epilepsy surgery at participating sites. The goal of this project is to better define patient selection, evaluation strategies, surgical therapies and outcomes. To date, 24 U.S. pediatric epilepsy centers have joined the project and over 2,000 patients have been enrolled providing valuable data about epilepsy surgery in children. In 2020, through a partnership with neuropsychologist, Madison Berl, Ph.D., from Children’s National, Washington D.C., extensive neuropsychological outcomes were added to the database to better characterize non-seizure outcomes of epilepsy surgery.

Recently the group published two studies from this ongoing collaboration. The first by Berl et al, “Leveraging expertise and optimizing clinical research: Initial success of a pediatric epilepsy surgery collaborative” was published in Epilepsia (https://onlinelibrary.wiley.com/doi/10.1111/epi.17579). This study described the process of setting up the collaborative network, as well as preliminary neuropsychological data of over 500 participants. Lower full-scale IQ scores were associated with earlier age of epilepsy onset, more frequent seizures, and abnormalities on magnetic resonance imaging. Further collection of both pre- and post-operative neuropsychological data will generate invaluable data to describe the benefits of epilepsy surgery beyond seizure control in future publications.

The second article by Singh et al, “Responsive neurostimulation in drug resistant pediatric epilepsy: Findings from the Epilepsy Surgery Subgroup of the Pediatric Epilepsy Research Consortium” (https://www.pedneur.com/article/S0887-8994(23)00075-9/fulltext) was published in Pediatric Neurology. This paper reported initial experience of 56 patients for which responsive neurostimulation was used as treatment for pediatric epilepsy, a procedure currently approved in ages 18 and over. Because few children < 18 years have received responsive neurostimulation treatment at any one center, a multi-center collaboration is necessary to report a meaningful number of patients. This study found the procedure to be both safe and effective, with 65% of patients experiencing at least 50% or more seizure reduction, 10% seizure free.

The Epilepsy Surgery Database project continues to add new members and enroll patients with additional projects arising from this data. The group has demonstrated the success of collaborative research across centers with a common goal. The annual research retreat for PERC will be held at Cook Children’s in May 2023 with the objective to set research goals and strategy for the coming years.

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