Registry data indicates limited seizure control in Lennox-Gastaut Syndrome patients
New data from the LGS-CORE registry reveals that only 4% of reported treatments achieved complete seizure cessation in patients with Lennox-Gastaut Syndrome.

The Lennox-Gastaut Syndrome (LGS) Foundation is set to present findings from its LGS Collaborative Outcomes Registry (LGS-CORE) at the 2026 NORD Rare Diseases & Orphan Products Breakthrough Summit in Washington, DC, scheduled for October 25–27.
Preliminary analysis of the registry data indicates significant challenges in epilepsy management for this patient population, with only 4% of recorded medical interventions resulting in total seizure control. The LGS-CORE registry functions as a long-term data repository aimed at tracking patient outcomes and treatment efficacy for this rare, complex form of childhood-onset epilepsy.
The findings highlight the difficulty of treating Lennox-Gastaut Syndrome, a condition often resistant to conventional anti-seizure medications. By aggregating patient-reported treatment experiences, the foundation seeks to provide a clearer picture of current therapeutic limitations, which may guide future clinical research priorities and patient care strategies.