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Scientists launch massive effort to map rare childhood epilepsy disorders

NCT ID NCT07413211

First seen Feb 20, 2026 · Last updated Jun 07, 2026 · Updated 13 times

Summary

This study follows children and adults with genetic developmental and epileptic encephalopathy (DEE) to understand how the disease progresses. It does not test any treatment or drug. Instead, researchers will measure changes in development, communication, motor skills, seizures, and quality of life over several years. The goal is to prepare for future clinical trials by learning what to measure and how the condition changes naturally.

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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

The condition(s) this trial relates to.

developmental and epileptic encephalopathy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.