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

Last updated: June 25, 2025
Sponsor: Imagine Institute
Overall Status: Active - Recruiting

Phase

N/A

Condition

Dravet Syndrome

Neurologic Disorders

Epilepsy

Treatment

N/A

Clinical Study ID

NCT06380192
HJ22-DEE-RETRO
  • All Genders

Study Summary

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.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Diagnosis of Developmental and Epileptic Encephalopathy

  • Registered with or benefiting from a social security scheme.

Exclusion

Exclusion Criteria:

  • Opposition of the patient or his/her parents to the re-use of data in the context ofthis study

  • Person subject to a safeguard of justice measure

Study Design

Total Participants: 400
Study Start date:
October 31, 2024
Estimated Completion Date:
December 31, 2026

Connect with a study center

  • CHU Amiens

    Amiens,
    France

    Site Not Available

  • CH Angers

    Angers,
    France

    Site Not Available

  • Chu Besancon

    Besançon,
    France

    Site Not Available

  • CHU Bordeaux

    Bordeaux,
    France

    Site Not Available

  • CHRU Brest

    Brest,
    France

    Site Not Available

  • CHU Clermont-Ferrand

    Clermont-Ferrand,
    France

    Site Not Available

  • CHU Grenoble

    Grenoble,
    France

    Site Not Available

  • CHU Lille

    Lille,
    France

    Site Not Available

  • CHU Limoges

    Limoges,
    France

    Site Not Available

  • CHU Lyon HCL

    Lyon,
    France

    Site Not Available

  • Assistance Publique Hopitaux de Marseille

    Marseille,
    France

    Site Not Available

  • CHU de Nancy

    Nancy,
    France

    Site Not Available

  • Hopitaux Pediatriques de Nice CHU Lenval

    Nice,
    France

    Site Not Available

  • CHU Pitié Salpétrière

    Paris,
    France

    Site Not Available

  • CHU Robert Debré

    Paris,
    France

    Site Not Available

  • Hôpital Armand Trousseau

    Paris,
    France

    Site Not Available

  • Necker-Enfants Malades Hospital

    Paris, 75015
    France

    Active - Recruiting

  • Chu Reims

    Reims,
    France

    Site Not Available

  • CHU Rennes

    Rennes,
    France

    Site Not Available

  • CHU Strasbourg

    Strasbourg,
    France

    Site Not Available

  • CHU Toulouse

    Toulouse,
    France

    Site Not Available

  • CHRU Tours

    Tours,
    France

    Site Not Available

  • Hôpital André Mignot (CH Versailles)

    Versailles,
    France

    Site Not Available

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