Unlocking the Future of Lennox-Gastaut Syndrome Care

Lennox-Gastaut syndrome (LGS) is a challenging and rare form of epilepsy that often begins in childhood. Characterized by severe seizures and cognitive difficulties, LGS leads to long-lasting disability—making effective care crucial. Recently, the LGS Foundation held its 3rd biennial Research Meeting of the Minds on July 21-22, 2025, uniting a diverse group of stakeholders including caregivers, researchers, and healthcare professionals to tackle the pressing issues surrounding LGS care.

Expert Insights: Closing the Gaps in LGS Treatment

In an engaging roundtable discussion hosted by NeurologyLive®, pediatric experts Dr. Scott Perry and Dr. Gita Gupta shared their insights on improving LGS care. They highlighted significant gaps in the current treatment landscape and emphasized the importance of fostering connections among various stakeholders to enhance research and care.

Collaborative Efforts to Revolutionize Data Sharing

Both doctors discussed leveraging existing resources, such as the LGS Foundation and the Pediatric Epilepsy Research Consortium (PERC), to standardize clinical data collection. This initiative aims to facilitate comparative effectiveness research, ultimately enabling healthcare providers to evaluate which medications work best under different circumstances.

"One of the key strategies is to start collecting data during daily clinical care, ensuring that we document notes in a uniform format," explained Dr. Perry. This foundational step is critical for advancing LGS treatment protocols.

Patient Engagement: The Role of Parents

Aiming for a more inclusive approach, the experts also emphasized the necessity of involving parents as active participants in data management. By utilizing third-party tools to organize and share health information, families can contribute significantly to the patient registry, which is vital for ongoing research.

A Global Perspective on LGS Treatment Guidelines

Additionally, both experts referred to the collaborative efforts with the International League Against Epilepsy (ILAE) and PERC, working towards a North American consensus on LGS treatment. This collaboration aims to lay a solid groundwork for future studies and comparisons.

Together, these coordinated initiatives represent a pivotal shift towards enhancing care delivery, optimizing treatment selection, and propelling research for the LGS community into a new era.