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NewsHow common is epilepsy in kids — really? Researchers at Weill Cornell are getting $1.6M from the CDC to find out. Current estimates are based on outdated data, and with over 1,000 genes now linked to epilepsy, a modern count is long overdue. The 4-year study will tap eight data sources — including AI and large language models — to deliver fresh numbers by fall 2028.
The CDC has awarded a $1.6 million grant to researchers at Weill Cornell University to get a clearer picture of pediatric epilepsy in the U.S. Led by Dr. Zachary Grinspan, the project — called the Collaboration to Estimate the Pediatric Incidence of Epilepsy — will pull from eight data sources, including Medicaid records, electronic health records, national health surveys, and AI-powered chart reviews using large language models.
The push for updated numbers comes as the field has evolved dramatically. Over 1,000 genes are now linked to epilepsy, reshaping how clinicians diagnose and treat the condition. Current CDC estimates — pegging active epilepsy at roughly 6 in every 1,000 children — are based on data that predate much of this genetic discovery.
Why it matters: Accurate prevalence data will help prioritize research funding, attract pharmaceutical investment in new therapies, and spotlight health equity gaps — including disparities in epilepsy surgery rates among Black children and limited specialist access in rural areas.
