Tracks how genetic developmental and epileptic encephalopathy changes over time
Reviews past clinical data from people with genetic developmental and epileptic encephalopathy.
Plain-language title generated from the registry record
Registry title: Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data
Key facts
- Where
- Amiens, Angers, Besançon, Bordeaux, Brest, Clermont-Ferrand, Grenoble, Lille, Limoges, Lyon, Marseille, Nancy, Nice, Paris, Reims, Rennes, Strasbourg, Toulouse, Tours, and Versailles, FranceSee the 23 sites
Where in France
- CHU AmiensAmiens, FranceNot yet recruiting
- CH AngersAngers, FranceNot yet recruiting
- CHU BesançonBesançon, FranceNot yet recruiting
- CHU BordeauxBordeaux, FranceNot yet recruiting
- CHRU BrestBrest, FranceNot yet recruiting
- CHU Clermont-FerrandClermont-Ferrand, FranceNot yet recruiting
- Chu GrenobleGrenoble, FranceNot yet recruiting
- CHU LilleLille, FranceNot yet recruiting
- CHU LimogesLimoges, FranceNot yet recruiting
- CHU Lyon HCLLyon, FranceNot yet recruiting
- Assistance Publique Hôpitaux de MarseilleMarseille, FranceNot yet recruiting
- CHU de NancyNancy, FranceNot yet recruiting
- Hopitaux Pediatriques de Nice CHU LenvalNice, FranceNot yet recruiting
- CHU Pitie SalpetriereParis, FranceNot yet recruiting
- CHU Robert DebréParis, FranceNot yet recruiting
- Hôpital Armand-TrousseauParis, FranceNot yet recruiting
- Necker-Enfants Malades HospitalParis, FranceTaking people
- CHU ReimsReims, FranceNot yet recruiting
- CHU RennesRennes, FranceNot yet recruiting
- CHU StrasbourgStrasbourg, FranceNot yet recruiting
- CHU ToulouseToulouse, FranceNot yet recruiting
- CHRU ToursTours, FranceNot yet recruiting
- Hôpital André Mignot (CH Versailles)Versailles, FranceNot yet recruiting
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Imagine Institute
- Trial code
- NCT06380192
- Record updated
- 29 June 2025
- Original description
Developmental and Epileptic Encephalopathy (DEE) are a heterogeneous group of neurodevelopmental disorders linked to both epilepsy and its underlying etiology, independently of epileptiform activity.Read full original descriptionShow less
Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data / DEE-RETRO
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.
Inclusion: Diagnosis of Developmental and Epileptic Encephalopathy; Registered with or benefiting from a social security scheme.
Exclusion: 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.