Scientists launch national registry to map devastating rare epilepsy

NCT ID NCT06593951

Summary

This study aims to understand how a rare, severe genetic epilepsy called EPM1 progresses over time. Researchers will remotely track symptoms and collect blood and urine samples from up to 200 participants across the US who have a confirmed genetic diagnosis. The goal is to gather essential information to help design future clinical trials for potential treatments.

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

  • Boston Childrens Hospital

    RECRUITING

    Boston, Massachusetts, 02115, United States

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

    Contact Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.