Early LGS-CORE Registry Data Show Only 4% of Reported Treatments Stopped All Seizures in Lennox-Gastaut Syndrome

SAN DIEGO, Oct. 20, 2026 /PRNewswire/ -- The Lennox-Gastaut Syndrome (LGS) Foundation will present the first data from its LGS Collaborative Outcomes Registry (LGS-CORE) at the 2026 NORD Rare Diseases & Orphan Products Breakthrough Summit, October 25 to 27 in Washington, DC. LGS-CORE is a real-world natural history study that has enrolled about 100 families toward a goal of 1,000. Early results show that most treatments reduce only some seizures, few stop them, and caregivers often cannot tell which medication is working.

LGS is a severe developmental and epileptic encephalopathy (DEE) that begins in childhood and affects ~50,000 Americans and over 1 million worldwide. Children and adults living with LGS have multiple drug-resistant seizure types, and most live with moderate-to-severe intellectual disability. There are no disease-modifying therapies, and there is no cure.

Preliminary findings from caregiver surveys include:

More than 95% of participants scored "Likely LGS" on the validated Refractory Epilepsy Screening Tool for LGS, confirming the registry is reaching the right patients.

"Families told us what their treatments actually do and don't do and their side effects, and the answer is sobering," said Helen Chen, PhD, Research Director of the LGS Foundation. "When their loved one takes four medications at once, no one can tell which one is helping. That is exactly the evidence gap we need to address."

About LGS-CORE

LGS-CORE is a real-world natural history study within the Foundation's Learn From Every Patient Database. It launched in February 2026 on NORD's IAMRARE™ registry platform.

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About the Foundation

The LGS Foundation is dedicated to improving the lives of individuals affected by LGS and associated developmental and epileptic encephalopathies through research, education, advocacy, and support. The Foundation advances research that overlaps LGS with the many other DEEs that affect the community it serves.

About the National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD®) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most.

SOURCE Lennox-Gastaut Syndrome (LGS) Foundation