Results suggest that Goal Attainment Scaling may offer a feasible, family-centered approach to capturing the patient experience and meaningful changes.

At the American Epilepsy Society (AES) 2022, we presented our findings from The Inchstone Project, which focuses on accelerating outcome measures for individuals with severe Developmental Epileptic Encephalopathies (DEE), determining the feasibility of using goal attainment scaling (GAS) to capture clinically meaningful change in the SNC2A- DEE population.