Massive study tracks rare epilepsy disorders to speed up future treatments

NCT ID NCT07413211

First seen Feb 20, 2026 · Last updated Apr 25, 2026 · Updated 7 times

Summary

This study follows over 22,000 children and adults with genetic developmental and epileptic encephalopathy (DEE) to learn how the disease changes over time. Participants join in-person visits, virtual visits, or online surveys. No treatments are tested; the goal is to gather data that will help design future clinical trials.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Weill Cornell Medicine

    RECRUITING

    New York, New York, 10021, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

Conditions

Explore the condition pages connected to this study.