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 type | Observational |
|---|---|
| Sex | All |
| Enrollment | 400 (estimated) |
| Sponsor | Imagine Institute Academic / other |
| Locations | 23 sites (Amiens and 22 other locations) |
| Status | Recruiting |
| Started | October 31, 2024 |
| Main results expected | December 31, 2026 |
| Study ends | December 31, 2026 |
| Registry record updated | June 29, 2025 |
| Trial ID | NCT06380192 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
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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
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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
- Study coordinator: Rima Nabbout, Pr
- Email: rima.nabbout@aphp.fr
- Phone: +33144381536
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.