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New registry aims to unlock secrets of rare baby epilepsy

NCT ID NCT04802135

Knowledge-focused Sponsor: Assistance Publique Hopitaux De Marseille 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is creating a registry of 200 patients with a rare, severe epilepsy that starts in the first month of life, often linked to a mutation in the KCNQ2 gene. Researchers will collect data on seizures, brain activity, development, and long-term outcomes through questionnaires and interviews with parents. The goal is to better understand the condition and pave the way for future treatments.

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 registry could help researchers better understand KCNQ2-related epilepsy and point toward new treatment strategies.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly benefit participants and may not lead to immediate therapies.

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 200 people

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

Started

Mar 2021

Expected to finish

Sep 2032

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

Retrospective observational study initially then prospective with inclusion of all patients with a KCNQ2-REE whose diagnosis was made in the EPIGENE network

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Epilepsy beginning before 1 month of life, and requiring the initiation of anti-epileptic treatment * Without occasional cause * Without brain malformation explaining epilepsy * No opposition from parents / guardians * Possibility for parents to complete parent questionnaires Exclusion Criteria: * Neonatal attacks of occasional cause (glycemic disorder, infection, etc.) * Acquired neonatal epilepsy (post-anoxic encephalopathy, stroke sequelae, etc.) * Neonatal epilepsy related to a brain malformation

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Conditions

The condition(s) this trial relates to.

developmental and epileptic encephalopathy developmental and epileptic encephalopathy, 7 epilepsy

As listed by the trial registrant

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

Epileptic encephalopathy

How to take part

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

  1. The places running it

    15 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

  • APHP Pitié Salpêtrière

    RECRUITING

    Paris, France

  • APHP Robert Debré

    NOT_YET_RECRUITING

    Paris, France

  • CHRU Lille

    NOT_YET_RECRUITING

    Lille, France

  • CHRU Strasbourg

    NOT_YET_RECRUITING

    Strasbourg, France

  • CHU Angers

    NOT_YET_RECRUITING

    Angers, France

  • CHU Bordeaux

    NOT_YET_RECRUITING

    Bordeaux, France

  • CHU Brest

    NOT_YET_RECRUITING

    Brest, France

  • CHU Limoges

    NOT_YET_RECRUITING

    Limoges, France

  • CHU Montpellier

    NOT_YET_RECRUITING

    Montpellier, France

  • CHU Rennes

    NOT_YET_RECRUITING

    Rennes, France

  • CHU Toulouse

    NOT_YET_RECRUITING

    Toulouse, France

  • CHU Tours

    NOT_YET_RECRUITING

    Tours, France

  • Hospices Civils Lyon

    NOT_YET_RECRUITING

    Lyon, France

  • Hôpital La Timone

    RECRUITING

    Marseille, 13005, France

  • Hôpital Necker

    NOT_YET_RECRUITING

    Paris, France

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