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ClinicalTrials.gov ID

NCT06380192

Lead Sponsor

Imagine InstituteOTHER

Overall Status

Recruiting

Study Type

Observational

Enrollment

400Estimated

Last Update Posted

Jun 29, 2025Actual

Start Date

Oct 31, 2024Actual

Primary Completion Date

Dec 31, 2026Estimated

Completion Date

Dec 31, 2026Estimated

Official Title

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

Brief 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.

• Developmental and Epileptic Encephalopathy

Ages Eligible for Study

Child (0-17)Adult (18-64)Older Adult (65+)

Sexes Eligible for Study

All

Accepts Healthy Volunteers

No

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

Observational Model

Case-Control

Time Perspective

Retrospective

Lead Sponsor

Imagine InstituteOTHER

sylvie.nguyenthetich@chu-lille.fr

mjennesson-lyver@chu-reims.fr