Clinical trial Recruiting at 1 site Observational

Understanding Developmental and Epileptic Encephalopathy through Clinical Data

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

Run by Imagine Institute · NCT06380192 · Data updated 2026-11-12

This study is trying to gather and analyze health information from patients with Developmental and Epileptic Encephalopathy to better understand the condition and improve treatment options.

Quick facts

Study typeObservational
SexAll
Enrollment400 (estimated)
SponsorImagine Institute
Academic / other
Locations23 sites (Amiens and 22 other locations)
StatusRecruiting
StartedOctober 31, 2024
Main results expectedDecember 31, 2026
Study endsDecember 31, 2026
Registry record updatedJune 29, 2025
Trial IDNCT06380192 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates for this study are individuals diagnosed with Developmental and Epileptic Encephalopathy who are registered with a social security scheme.

Probably not a fit

Patients who oppose the reuse of their clinical data or are under legal guardianship may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to create a comprehensive database by collecting and analyzing clinical data from patients diagnosed with Developmental and Epileptic Encephalopathy (DEE). By examining the natural history and specific biomarkers associated with DEE, researchers hope to improve classification and understanding of the condition based on its genetic etiology. The findings will facilitate personalized therapeutic management and the development of management recommendations that are currently lacking. The study will utilize retrospective follow-up data on a national scale to achieve these goals.

Why it matters

Potential benefit: If successful, this study could lead to more personalized and effective treatment strategies for patients with Developmental and Epileptic Encephalopathy.

How similar studies have gone: Other studies focusing on the natural history and biomarkers of neurodevelopmental disorders have shown promise, indicating that this approach may yield valuable insights.

Who can join: the full rules

Show full inclusion / exclusion criteria
Inclusion Criteria:

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

Exclusion Criteria:

* 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

Where it's running

  • Necker-Enfants Malades Hospital
    Paris, France
    Recruiting
  • CHU Amiens
    Amiens, France
    Not yet recruiting
  • CH Angers
    Angers, France
    Not yet recruiting
  • Chu Besancon
    Besançon, France
    Not yet recruiting
  • CHU Bordeaux
    Bordeaux, France
    Not yet recruiting
  • CHRU Brest
    Brest, France
    Not yet recruiting
Show 17 more locations
  • CHU Clermont-Ferrand
    Clermont-Ferrand, France
    Not yet recruiting
  • CHU Grenoble
    Grenoble, France
    Not yet recruiting
  • CHU Lille
    Lille, France
    Not yet recruiting
  • CHU Limoges
    Limoges, France
    Not yet recruiting
  • CHU Lyon HCL
    Lyon, France
    Not yet recruiting
  • Assistance Publique Hopitaux de Marseille
    Marseille, France
    Not yet recruiting
  • CHU de Nancy
    Nancy, France
    Not yet recruiting
  • Hopitaux Pediatriques de Nice CHU Lenval
    Nice, France
    Not yet recruiting
  • CHU Pitié Salpétrière
    Paris, France
    Not yet recruiting
  • CHU Robert Debré
    Paris, France
    Not yet recruiting
  • Hôpital Armand Trousseau
    Paris, France
    Not yet recruiting
  • Chu Reims
    Reims, France
    Not yet recruiting
  • CHU Rennes
    Rennes, France
    Not yet recruiting
  • CHU Strasbourg
    Strasbourg, France
    Not yet recruiting
  • CHU Toulouse
    Toulouse, France
    Not yet recruiting
  • CHRU Tours
    Tours, France
    Not yet recruiting
  • Hôpital André Mignot (CH Versailles)
    Versailles, France
    Not yet recruiting

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
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Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.