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Scientists track 1,000 kids with rare epilepsies to uncover better treatments

NCT ID NCT05126914

Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 1,000 children and teens with rare epilepsies (like West and Dravet syndromes) to see how different treatments affect their seizures and thinking skills. Researchers will compare care across hospitals to find what works best. The goal is to give families clearer information and help doctors make better treatment choices.

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

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2025

Expected to finish

Dec 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The population studied in this work will be a pediatric population: from birth to the end of adolescence. There is no limitation in the epileptic syndromes provided that it is a rare epilepsy according to the waxers with a prevalence of 1 in 2000. As mentioned here on several occasions, there is little data on it. efficacy of treatments and the outcome of rare epilepsies. A fairly wide opening on the syndromes to be included will make it possible to collect data without being limited to those which are the subject of the most frequent publications and therefore provide data not available to date.

Ages

Up to 15 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Diagnosis for rare epilepsy (based on ORPHA codes) * holders of parental authority not opposed * Be followed in one of the declared centers of the study Exclusion Criteria: * opposition from the holders of parental authority or the patient

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Conditions

The condition(s) this trial relates to.

Dravet syndrome Epilepsies, Myoclonic epilepsy infantile spasms Spasms, Infantile

As listed by the trial registrant

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

Dravet syndrome Epilepsy West syndrome

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    11 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • CHRU Lille

    RECRUITING

    Lille, 59000, France

  • CHU Angers

    RECRUITING

    Angers, 49933, France

  • CHU Strasbourg- Hôpital de Hautepierre

    RECRUITING

    Strasbourg, 67098, France

  • CHU de Bordeaux

    RECRUITING

    Bordeaux, 33076, France

  • CHU de Brest - Hôpital de la Cavale Blanche

    RECRUITING

    Brest, 29200, France

  • CHU de Tours - hôpital Clocheville

    RECRUITING

    Tours, 37044, France

  • HFME - HospiceS Civils De Lyon

    RECRUITING

    Lyon, 69000, France

  • Hopital Robert Debré - Neurologie

    RECRUITING

    Paris, 75019, France

  • Hôpital La Timone - APHM

    RECRUITING

    Marseille, 13005, France

  • Hôpital Necker - APHP

    RECRUITING

    Paris, 75015, France

  • Hôpital Purpan - CHU de Toulouse

    RECRUITING

    Toulouse, 31000, France

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