Counting the uncounted: a nationwide look at two rare epilepsies

NCT ID NCT06395792

NEW Terminated Knowledge-focused Sponsor: Takeda Source: ClinicalTrials.gov ↗

First seen Aug 17, 2026 · Last updated Aug 17, 2026

Summary

This observational study aims to measure how many people in Portugal have Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare and severe forms of epilepsy. Researchers will review existing medical records from about three public hospitals to estimate the percentage of people diagnosed in 2022 and newly diagnosed in 2021 and 2022. They will also break down the numbers by age group (children, teenagers, adults) and gather extra details about diagnosis patterns. No personal information is collected, and no treatment is given.

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: This study could provide a clearer picture of how many people in Portugal live with these rare epilepsy syndromes, helping to plan healthcare resources and support services.
What could go wrong: Because it only looks at hospital records from a few sites, the numbers may not fully represent the entire country, and the study does not test any treatment.

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.

Dravet syndrome Epilepsies, Myoclonic Lennox-Gastaut syndrome

As listed by the trial registrant

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

DRAVET SYNDROME (DS) LENNOX-GASTAUT SYNDROME (LGS)

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