Pediatric Epilepsy Surgery Conference 2026

This research meeting is held in collaboration with the Pediatric Epilepsy Research Consortium (PERC) through its Surgery, Neuromodulation, and Neuropsychology Special Interest Groups and is not part of the family conference. Attendance is by invitation only. 

The main goal of this meeting is to address the effects of epilepsy surgeries that are not intended or expected to result in seizure freedom, on daily function and quality of life. We will use parent stories to frame priorities, choose one retrospective multicenter study that is practical for PERC sites, and agree on a small set of functional outcome assessments that retrospective chart review can support. The study should be able to answer questions families actually ask (“Will my child think more clearly? Will school be easier? Will we be in the hospital less?”) and produce plain language summaries clinics can use in real‑world counseling.

A secondary goal of the meeting is to propose that our organizations retire the ‘palliative’ label in the epilepsy surgery context and instead describe these procedures using a patient‑centered framework. Specifically, we will recommend language that presents corpus callosotomy,  VNS, RNS, DBS, and non-curative resections and LITT as treatments that change the course of epilepsy and have the potential to make seizures less harmful over time, rather than as ‘palliative’ surgeries. This policy recommendation would guide how clinicians talk with families, how pathways are described in guidelines, and how future research characterizes surgeries not intended to result in seizure freedom.

The meeting will focus on family experience and functional outcomes when seizures continue, and design one retrospective multi-center study that quantifies functional benefits and seizure outcomes classifications. Outputs will include a small, shared set of functional outcome assessments that charts can support.

This work advances the NIH’s Epilepsy Research Benchmarks – Area IV: IV.A: Understand and limit the impact of epilepsy on non‑seizure outcomes such as neurodevelopment, mental health, cognition, health‑related quality of life, and other functions; IV.B: Understand and limit the impact of anti‑seizure treatments (medical, surgical, neuromodulation) on those same non‑seizure outcomes.

Many people who have had a hemispherectomy, or other surgeries which remove or disconnect an occipital lobe, live with homonymous hemianopia. One of the biggest questions families ask as kids become teens and young adults is: Can they ever drive safely and legally? In this session, Alex Bowers, PhD and Jing Xu, PhD will share what we currently know about driving with homonymous hemianopia and factors that are important for real-world safety.

Dr. Bowers and Dr Xu collected study data with our community at the 2024 Boston conference, where teens and young adults completed vision and driving-related testing. They will return to the conference to report back to families, explain what the testing measured, and share what the results suggest and where the research is headed.

Families will leave with a clearer understanding of how driving can be evaluated for people with visual field loss and what questions to ask your eye care team, as well as practical strategies that can help with everyday mobility, whether or not driving is the right goal.

Session times are placeholders for now. Final times will be set once we confirm schedules.

This panel will highlight studies inspired, funded, or recruited by the Pediatric Epilepsy Surgery Alliance focused on two issues that matter deeply to families: skill development after hemispherectomy and vision outcomes after resections. Speakers will discuss how these research questions grew out of real family concerns, what the studies aimed to better understand, and what has been learned so far. Attendees will gain insight into how family-driven research can help answer practical questions about recovery, long-term function, and life after epilepsy surgery.