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NCT06380192Recruiting

Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data

Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data / DEE-RETRO

Source: ClinicalTrials.gov · Last updated 29 Jun 2025 · Not updated for over 12 months - ask the site whether it is still open

Brief summary (registry, in English)

Developmental and Epileptic Encephalopathy (DEE) are a heterogeneous group of neurodevelopmental disorders linked to both epilepsy and its underlying etiology, independently of epileptiform activity. The creation of a database with retrospective follow-up of a large number of patients on a national scale will enable better knowledge of specific biomarkers, and thus a better classification and understanding of the natural evolution of DEE according to their etiology. This will enable better, more personalized therapeutic management of patients, depending on etiology and the presence or absence of these biomarkers. The investigators will also be able to draw up management recommendations, which are currently non-existent.

Status (registry)
Recruiting
Study type
Observational
Enrollment
400 (estimated)
First submitted
28 Mar 2024
Start date
31 Oct 2024
Primary completion date
31 Dec 2026
Lead sponsor
Imagine Institute
Diseases
Epilepsy
NCT number
NCT06380192

What you commit to

  • Study type: Observational
  • Planned participants: 400
  • From 31 Oct 2024 to the primary completion date, 31 Dec 2026
  • 23 sites in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other

  • Opposition of the patient or his/her parents to the re-use of data in the context of this study
  • Person subject to a safeguard of justice measure

Who the study is looking for

  • Diagnosis of Developmental and Epileptic Encephalopathy
  • Registered with or benefiting from a social security scheme.

Sex: All · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (23)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
CHU Amiens
Coordinator of this site? Confirm its status
AmiensFranceNot yet recruiting
CH Angers
Coordinator of this site? Confirm its status
AngersFranceNot yet recruiting
CHU Besançon
Coordinator of this site? Confirm its status
BesançonFranceNot yet recruiting
CHU Bordeaux
Coordinator of this site? Confirm its status
BordeauxFranceNot yet recruiting
CHRU Brest
Coordinator of this site? Confirm its status
BrestFranceNot yet recruiting
CHU Clermont-Ferrand
Coordinator of this site? Confirm its status
Clermont-FerrandFranceNot yet recruiting
Chu Grenoble
Coordinator of this site? Confirm its status
GrenobleFranceNot yet recruiting
CHU Lille
Coordinator of this site? Confirm its status
LilleFranceNot yet recruiting
CHU Limoges
Coordinator of this site? Confirm its status
LimogesFranceNot yet recruiting
CHU Lyon HCL
Coordinator of this site? Confirm its status
LyonFranceNot yet recruiting
Assistance Publique Hôpitaux de Marseille
Coordinator of this site? Confirm its status
MarseilleFranceNot yet recruiting
CHU de Nancy
Coordinator of this site? Confirm its status
NancyFranceNot yet recruiting
Hopitaux Pediatriques de Nice CHU Lenval
Coordinator of this site? Confirm its status
NiceFranceNot yet recruiting
Hôpital Armand-Trousseau
Coordinator of this site? Confirm its status
ParisFranceNot yet recruiting
Necker-Enfants Malades Hospital
Coordinator of this site? Confirm its status
ParisFranceRecruiting
CHU Pitie Salpetriere
Coordinator of this site? Confirm its status
ParisFranceNot yet recruiting
CHU Robert Debré
Coordinator of this site? Confirm its status
ParisFranceNot yet recruiting
CHU Reims
Coordinator of this site? Confirm its status
ReimsFranceNot yet recruiting
CHU Rennes
Coordinator of this site? Confirm its status
RennesFranceNot yet recruiting
CHU Strasbourg
Coordinator of this site? Confirm its status
StrasbourgFranceNot yet recruiting
CHU Toulouse
Coordinator of this site? Confirm its status
ToulouseFranceNot yet recruiting
CHRU Tours
Coordinator of this site? Confirm its status
ToursFranceNot yet recruiting
Hôpital André Mignot (CH Versailles)
Coordinator of this site? Confirm its status
VersaillesFranceNot yet recruiting

This page is information, not medical advice. Discuss any trial with your doctor.