New registry aims to unlock secrets of rare baby epilepsy
NCT ID NCT04802135
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.
Disclaimer
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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.
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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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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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APHP Pitié Salpêtrière
RECRUITINGParis, France
Contact
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APHP Robert Debré
NOT_YET_RECRUITINGParis, France
Contact
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CHRU Lille
NOT_YET_RECRUITINGLille, France
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CHRU Strasbourg
NOT_YET_RECRUITINGStrasbourg, France
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CHU Angers
NOT_YET_RECRUITINGAngers, France
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CHU Bordeaux
NOT_YET_RECRUITINGBordeaux, France
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CHU Brest
NOT_YET_RECRUITINGBrest, France
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CHU Limoges
NOT_YET_RECRUITINGLimoges, France
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CHU Montpellier
NOT_YET_RECRUITINGMontpellier, France
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CHU Rennes
NOT_YET_RECRUITINGRennes, France
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CHU Toulouse
NOT_YET_RECRUITINGToulouse, France
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CHU Tours
NOT_YET_RECRUITINGTours, France
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Hospices Civils Lyon
NOT_YET_RECRUITINGLyon, France
Contact
Contact
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Hôpital La Timone
RECRUITINGMarseille, 13005, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
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Hôpital Necker
NOT_YET_RECRUITINGParis, France
Contact Email: •••••@•••••