Researchers launch major study to understand rare childhood epilepsy disorders

NCT ID NCT07413211

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study tracks children and adults with genetic developmental and epileptic encephalopathy (DEE) over time. It does not test any treatment but collects information on development, seizures, and quality of life through in-person visits, virtual visits, or online surveys. The goal is to prepare for future clinical trials by understanding how the disease progresses.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to
If successful, this study could help design better clinical trials for treatments of genetic developmental and epileptic encephalopathy.
What could go wrong
This is an observational study with no treatment, so it cannot directly improve health. Results may not apply to all forms of DEE.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

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

Contacts and locations

Locations

  • Weill Cornell Medicine

    RECRUITING

    New York, New York, 10021, United States

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