The Lennox-Gastaut Syndrome (LGS) Foundation and the National Organization for Rare Disorders (NORD) launched a study with global reach to research LGS and LGS-Related Developmental and Epileptic Encephalopathies (LGS-DEE), which are a group of rare diseases characterized by uncontrolled seizures, developmental delay, and lifelong intellectual disability. There are currently no cures for LGS and LGS-DEE.
The new study, LGS and LGS-Related DEE Collaborative Outcomes Registry (LGS-CORE Study), creates a platform for patients around the world to share information about LGS and DEE. Its purpose is to build an international resource to be used by scientists in future research. LGS is a rare disorder that affects one million people worldwide. In addition to frequent seizures, patients, caregivers, and families are further impacted by issues with sleep, behavior, mobility, feeding, and communication.
“The LGS Foundation is proud to launch this registry, a vital step toward transforming how we understand and treat LGS. By bringing together patient experiences, clinical data, and the latest research, we are creating a powerful resource for scientists, clinicians, and—most importantly—the people living with this condition,” said LGS Foundation Executive Director Dr. Tracy Dixon-Salazar. This is more than data collection; it’s a commitment to accelerating progress, improving care, and giving every voice in our community the chance to shape the future of treatment.”
To help drive awareness and participation, the LGS Foundation will roll out the registry in several phases over the coming months, beginning with patient enrollment and data collection, and followed by integration of clinical insights and research partnerships to drive meaningful discoveries.
“The success of the registry is dependent upon community participation. Our goal is to enroll as many patients, or their parents or legal guardians, as possible,” said Dixon-Salazar.
LGS-CORE Study is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is confidential and stored securely in the IAMRARE online portal. The LGS Foundation may share the data with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board, which includes scientists, doctors, and patient advocates.
The LGS Foundation is launching the study in collaboration with NORD, an independent nonprofit that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. The LGS Foundation is a member of NORD, and the two organizations work together to eliminate the challenges that rare disease patients face.
“This new study has tremendous promise to build strong partnerships and engage the patient community to address current knowledge gaps for LGS and LGS-DEE. NORD is thrilled to be a part of driving research and innovation-based outcomes for all the families in the LGS and LGS-DEE community,” said Janine Lewis, Director of Research Operations, NORD.
For more information, visit https://lgs-core.iamrare.org
About National Organization for Rare Disorders, Inc. (NORD®)
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. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
Updated 02/27/26 (KK)