For Researchers

The LGS-CORE Study collects disease-specific natural history data about individuals with Lennox-Gastaut Syndrome (LGS) specifically, and related Developmental Epileptic Encephalopathies (DEE) more broadly. The goal of this platform is to promote the development of new treatments by aggregating thousands of patients and caregivers’ lived experience with LGS. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life for patients and caregivers
• Clinical trial participation

We are interested in sharing our data with you! If you would like access to the LGS-CORE Study data for a research project, please contact our Registry Administrator at research@lgsfoundation.org for more information. Access to the LGS-CORE Study data is contingent upon project approval by the LGS-CORE Study Advisory Board.