Recruiting

Understanding how rare epilepsy conditions develop over time

Plain-English translation of NCT07413211 on ClinicalTrials.gov ↗ · Source last updated February 2026 · Translation generated June 2026 · How we translate trials

What is this trial?

This is a long-term observation study for people with developmental and epileptic encephalopathy (DEE) — a group of rare genetic conditions that cause seizures and developmental delays. Instead of testing a new medication, researchers are carefully tracking how these conditions change over time in different people. By understanding the natural course of these diseases, scientists can better design future clinical trials and treatments.

Right now, there are very few treatments available for rare genetic epilepsies, and doctors don't have enough information about how these conditions naturally progress. This study aims to fill that gap by documenting what happens to patients over months and years, which will help researchers design better trials and ultimately bring new therapies to patients faster.

Do you qualify?

You likely qualify if…

you have been diagnosed with a genetic form of developmental and epileptic encephalopathy, confirmed by genetic testing
you have seizures or significant developmental delays related to your condition
you speak English (required for in-person and virtual visits; registries accept any language)
you can commit to participating — whether that means attending visits, completing surveys, or both

You likely don't qualify if…

you have a serious brain condition or behavioral problem unrelated to your epilepsy that would make it hard to interpret study results
you were born very early (before 35 weeks gestation) or have a history of brain bleeding or structural brain problems
you have other medical conditions that your doctor believes would interfere with understanding your epilepsy

What participation looks like

You can choose how involved you want to be. Some participants attend in-person visits at Weill Cornell Medicine in New York City every 6 months to 2 years; others join virtual visits via Zoom from home; and some simply complete online surveys. All participants will be asked questions about their symptoms, development, seizures, and how the condition affects daily life — information that helps researchers understand the disease better.

AI-generated summary from trial data · Jun 4, 2026 · Not medical advice

Trial locations(1 site)

United States

Weill Cornell Medicine, New York, New York