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.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for EPILEPTIC ENCEPHALOPATHY are added.
By submitting, you agree to our Terms of use
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
-
APHP Pitié Salpêtrière
RECRUITINGParis, France
-
APHP Robert Debré
NOT_YET_RECRUITINGParis, France
-
CHRU Lille
NOT_YET_RECRUITINGLille, France
-
CHRU Strasbourg
NOT_YET_RECRUITINGStrasbourg, France
-
CHU Angers
NOT_YET_RECRUITINGAngers, France
-
CHU Bordeaux
NOT_YET_RECRUITINGBordeaux, France
-
CHU Brest
NOT_YET_RECRUITINGBrest, France
-
CHU Limoges
NOT_YET_RECRUITINGLimoges, France
-
CHU Montpellier
NOT_YET_RECRUITINGMontpellier, France
-
CHU Rennes
NOT_YET_RECRUITINGRennes, France
-
CHU Toulouse
NOT_YET_RECRUITINGToulouse, France
-
CHU Tours
NOT_YET_RECRUITINGTours, France
-
Hospices Civils Lyon
NOT_YET_RECRUITINGLyon, France
-
Hôpital La Timone
RECRUITINGMarseille, 13005, France
-
Hôpital Necker
NOT_YET_RECRUITINGParis, France
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Do brain monitors fool seizure kids? study aims to find out
- New gene test could unlock mysteries of severe epilepsy in kids
- Gene testing may personalize seizure care for infants
- Epilepsy drug study for kids halted early: what we know
- Massive genetic study aims to unlock Epilepsy's secrets
- New hope for rare seizure patients: Long-Term drug safety confirmed