Collaborative Strategies to Enhance Care and Data Sharing in LGS

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Lennox-Gastaut syndrome (LGS) is a rare epilepsy syndrome that typically begins in childhood and is associated with frequent seizures, cognitive impairment, and long-term disability. Earlier this summer, the LGS Foundation hosted its 3rd biennial LGS Research Meeting of the Minds, held July 21–22, 2025, bringing together caregivers, researchers, health care providers, scientists, advocacy representatives, and industry partners to discuss clinically relevant strategies to advance evidence-based LGS care across the lifespan.

In collaboration with LGS Foundation, NeurologyLive^® held a roundtable discussion with 2 pediatric experts who attended and participated in the meeting. Throughout the panel discussion, the duo covered topics like major gaps in LGS care, fostering connections among diverse stakeholders, and shaping strategies to guide future research. The guests featured in this panel included Scott Perry, MD, head of neurosciences at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center, and Gita Gupta, MD, MS, assistant professor of pediatrics at the Johns Hopkins University.

In this second episode, clinicians commented on leveraging existing resources, including the LGS Foundation and the Pediatric Epilepsy Research Consortium (PERC), to standardize clinical data collection and improve comparative effectiveness research in LGS. Experts noted that plans include expanding the LGS patient registry, developing consensus treatment guidelines, and engaging parents as active data stewards through third-party tools that organize and share medical information. The duo underscored that these coordinated efforts aim to improve care delivery, optimize treatment selection, and advance research for the LGS community.

Transcript edited for clarity. Click here to view more content of the LGS Foundation.

Isabella Ciccone, MPH: Now that we’ve talked a little bit about the gaps in care, my next question is, what are some actionable strategies proposed during the meeting that can improve care delivery or outcomes for patients with LGS?

Scott Perry, MD: Yeah. So, just to get back to the gap that I brought up, one of the actionable items is using the resources we have. We’ve got a few really good resources at our disposal with the LGS Foundation. One is that the LGS Foundation has been working fairly closely with PERC, which has an LGS special interest group. That group includes multiple investigators across multiple institutions, who we believe could set up a framework for collecting clinical data in a fairly standardized way. This might allow us to do comparative effectiveness studies to understand which medicines may work better in certain situations, just through the natural history of the way we practice medicine—because we all practice slightly differently and have different medicines that are our preferred first lines—and then we’d be able to compare.

While that’s not a defined and absolute protocol yet, one of the ideas that came out of it is that we could begin collecting data just during our daily clinical care, writing notes in a similar format. That’s a big step to get people to agree to. That was one thing. The LGS Foundation already has a patient registry that has gotten started, and we talked about expanding upon that to continue collecting more information about what medications patients are using, because that will be another data source we can use.

There are also several groups. There’s an international group with the International League Against Epilepsy (ILAE), as well as PERC, which is also working on a North American consensus on the treatment of LGS. That will be another source to, if nothing else, give us a foundation of where we start from to then compare.

Gita Gupta, MS, MS: And there was also a call to action for parents to be more mindful—or they’re already very mindful stewards of their children’s data—but to use third-party commercial companies that are helping parents organize their children’s medical information and synthesize it in a way that is interpretable to a nonmedical person. It was interesting to see that these groups empower parents to share their children’s data with different researchers and organizations that are trying to help children with LGS.