Researchers launch major study to track rare epilepsy EPM1 over time

NCT ID NCT06593951

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is following 200 people with a confirmed genetic diagnosis of EPM1, a rare and progressive epilepsy disorder. Researchers will collect clinical data and biological samples (blood and urine) over time to understand how the disease progresses. The goal is to identify biomarkers and define endpoints that can be used in future clinical trials for treatments that could slow or stop the disease.

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 identify key disease markers and meaningful endpoints, paving the way for future clinical trials for EPM1 treatments.
What could go wrong
This is an observational study, not a treatment trial. It will not directly benefit participants and may not yield clear biomarkers or endpoints due to the rarity and variability of the disease.

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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

  • Boston Childrens Hospital

    RECRUITING

    Boston, Massachusetts, 02115, United States

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