Answer Questions About Your LGS Journey (Phase 2)

Empowering Families, Advancing LGS Research.

The LGS Patient-Family Registry is a powerful tool for the LGS community to advance understanding of LGS, areas of unmet need, standards of care, and new therapies. Data from the registry is shared back to the LGS community and is also used by researchers and scientists. By participating, patient families become part of the research team, helping to uncover trends in causes and diagnosis as well as new directions in therapies and treatment.

About the LGS Patient-Family Registry

By providing a means to collect and document the experiences, medications, symptoms, milestones, and other aspects of LGS from thousands of registry participants, the LGS Patient-Family Registry empowers LGS stakeholders to:

  • Fully understand the full range of LGS characteristics
  • Identify trends that generate new insights into LGS and areas for additional study
  • Facilitate partnerships with university researchers and pharmaceutical companies
  • Develop standards of care
  • Expedite LGS clinical trials by helping connect registry participants with clinical trials and research studies
  • Store their LGS medical data in one place
  • Accelerate treatments and cures LGS

It was developed in 2024 to accelerate research and the search for the cures for LGS. It works by creating a platform for patients around the world to share information about LGS on developmental history, medical complications, and quality of life.

Join Now!

The LGS Patient-Family Registry is only as powerful as the people who participant. And learning more about the experiences, medications, symptoms, milestones, and other aspects of LGS is key to advancing our understanding and discovering new therapies and treatments.

Visit the LGS Patient-Family Registry for more information for researchers and patients. From there, register and help create a brighter future for individuals impacted by LGS.

Visit the LGS Registry – Coming Soon 

LGS Learn from Every Patient Database

Implemented in 2023, the LGS Learn from Every Patient Database collects medical records about those with LGS to document the impact of LGS on a person’s health over their lifetime. This information can be used to help understand what treatments work in LGS, how LGS Associated Disorders, such as sleep, communication, feeding, and behavioral issues, are managed, and how LGS evolves with aging.

The LGS Learn from Every Patient Database consists of three phases:


Updated 03/26/24