Goals and Priorities of Genetic Epilepsy in Adults Network (GEAN) Consortium: Elizabeth Gerard, MD

WATCH TIME: 3 minutes

"We are finally in a position to recognize how many adults are living with genetic epilepsies, and how little we formally understand about their long-term trajectories. By working together, we can generate the evidence clinicians need and give patients a clearer picture of what adulthood with these conditions truly looks like."

Genetic epilepsies have become increasingly recognized across adult neurology as broader access to next-generation sequencing reveals pathogenic variants in patients previously labeled as having “idiopathic” or “cryptogenic” epilepsy. While pediatric epileptologists have long incorporated molecular diagnoses into clinical decision making, adult-focused pathways remain underdeveloped, and many neurologists encounter only a small number of patients with any specific gene. This creates meaningful challenges for prognosis, treatment selection, and counseling, particularly as gene-specific natural histories and therapeutic responses are poorly characterized in adulthood.

At the 2025 American Epilepsy Society (AES) Annual Meeting, held December 5-9 in Atlanta, Georgia, leaders of the Genetic Epilepsy in Adults Network (GEAN) outlined new efforts to address these gaps. The newly funded AES consortium brings together clinicians and translational scientists from major epilepsy centers with the goal of building shared registries, regulatory frameworks, and collaborative research programs capable of defining adult genetic epilepsy phenotypes at scale. Early initiatives include establishing multi-institutional IRB and data-use agreements, harmonizing clinical data capture, and preparing for cross-sectional and longitudinal natural history studies that will support both clinical care and future trial design.

During the meeting, NeurologyLive^® spoke with Elizabeth Gerard, MD, an epileptologist at Northwestern Medicine and a leading member of the consortium, to discuss how GEAN intends to advance recognition and care of genetic epilepsies in adults. Gerard described the clinical motivations behind the network, its short- and long-term research goals, and the urgent need to characterize adult trajectories for rare genetic syndromes. She also highlighted how improved understanding of this population may influence counseling, therapeutic development, and multidisciplinary engagement across the epilepsy community.

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