Our 2nd Biennial LGS Research Meeting of the Minds was an Overwhelming Success!
Watch the short recap video from our Executive Director, Tracy Dixon-Salazar, PhD
Over 150 people attended this two-and-a-half-day hybrid research meeting in Baltimore, MD to discuss how we will advance clinical research in LGS.
Goals of the Meeting:
- To convene caregivers, healthcare providers, researchers, advocates, FDA officials, and industry partners to discuss how we measure seizure and non-seizure outcomes (like communications, behavior, sleep, and other key areas) in LGS research studies and clinical trials.
- To use our learnings from this meeting to guide the LGS Foundation’s research funding strategy in 2024.
What We Learned:
- We learned that each stakeholder has a unique perspective on measuring seizures and non-seizure outcomes in LGS, and that we must all work together to ensure we are doing the best possible studies on the issues that matter most to patient families.
- We learned the current state of the art for measuring outcomes in LGS are seriously lacking, and many times, the tools used to measure progress are too advanced or too general for our LGS loved ones. We need better measures!
- We learned that there is a great deal of progress in measuring outcomes both inside the epilepsy community and externally in the fields of neurodevelopmental disorders, sleep, communications, and behavior. We must harness this progress to improve LGS research and clinical trials.
- We learned that improving LGS research studies is ripe for progress. Patient families, healthcare providers, researchers, advocates, FDA officials, and industry partners shared dozens of areas where the LGS Foundation can help to advance this work. It was incredible!
What’s next?
We are working hard to summarize all of the amazing insights that came from this meeting and prioritize, with our Patient Family Advisors, where we go next in funding LGS Research. Watch for new Cure LGS 365 Research Grant Request for Applications coming soon!
Updated 10/04/2023