Understanding Developmental and Epileptic Encephalopathy through Clinical Data

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

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
• Enrollment: 400 (estimated)
• Sex: All
• Sponsor: Imagine Institute (Academic / other)
• Locations: 23 sites (Amiens and 22 other locations)
• Trial ID: NCT06380192 on ClinicalTrials.gov

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.

Who should consider this trial

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

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

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

Eligibility 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 this trial is running

Amiens and 22 other locations

• 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)
• 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)
• Necker-Enfants Malades Hospital — Paris, France (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

Conditions Developmental and Epileptic Encephalopathy