Actively Recruiting
Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data
Led by Imagine Institute · Updated on 2025-06-29
400
Participants Needed
23
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Developmental and Epileptic Encephalopathies (DEE) are a diverse group of neurodevelopmental disorders associated with epilepsy and their underlying causes. Researchers aim to create a large national database with retrospective follow-up of many patients to better understand specific biomarkers. This will help improve classification and knowledge of DEE's natural progression depending on their causes, allowing for more personalized care and development of management recommendations where none currently exist. This observational study includes patients diagnosed with DEE and control patients undergoing routine EEG exams without epilepsy diagnoses. Data from 2002 to 2026 will be reused to identify diagnostic and early predictive biomarkers, categorize patient subgroups with these biomarkers, and assess quality of life, adaptive behavior, behavioral disorders, and autism spectrum disorders. The study uses existing clinical data without administering new treatments. Participants' data will be analyzed retrospectively to find markers linked to neurodevelopmental outcomes in DEE. The study will assess multiple aspects of patients' lives and behaviors over time. No new interventions or visits are required, as the study relies on existing health records. The trial runs until the end of 2026, with the goal to improve understanding and personalized management of DEE.
CONDITIONS
Brief Title
Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosis of Developmental and Epileptic Encephalopathy
- Registered with or benefiting from a social security scheme
You will not qualify if you...
- 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
AI-Screening
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Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote) to confirm eligibility and consent
Duration - Up to 24 years (from 2002 through 2026)
Participants’ clinical data and health outcomes are observed over time to understand the natural history of developmental and epileptic encephalopathies.
Data collected as part of routine healthcare visits and assessments
Trial Site Locations
Total: 23 locations
1
CHU Amiens
Amiens, France
Not Yet Recruiting
2
CH Angers
Angers, France
Not Yet Recruiting
3
Chu Besancon
Besançon, France
Not Yet Recruiting
4
CHU Bordeaux
Bordeaux, France
Not Yet Recruiting
5
CHRU Brest
Brest, France
Not Yet Recruiting
6
CHU Clermont-Ferrand
Clermont-Ferrand, France
Not Yet Recruiting
7
CHU Grenoble
Grenoble, France
Not Yet Recruiting
8
CHU Lille
Lille, France
Not Yet Recruiting
9
CHU Limoges
Limoges, France
Not Yet Recruiting
10
CHU Lyon HCL
Lyon, France
Not Yet Recruiting
11
Assistance Publique Hopitaux de Marseille
Marseille, France
Not Yet Recruiting
12
CHU de Nancy
Nancy, France
Not Yet Recruiting
13
Hopitaux Pediatriques de Nice CHU Lenval
Nice, France
Not Yet Recruiting
14
Necker-Enfants Malades Hospital
Paris, France, 75015
Actively Recruiting
15
CHU Pitié Salpétrière
Paris, France
Not Yet Recruiting
16
CHU Robert Debré
Paris, France
Not Yet Recruiting
17
Hôpital Armand Trousseau
Paris, France
Not Yet Recruiting
18
Chu Reims
Reims, France
Not Yet Recruiting
19
CHU Rennes
Rennes, France
Not Yet Recruiting
20
CHU Strasbourg
Strasbourg, France
Not Yet Recruiting
21
CHU Toulouse
Toulouse, France
Not Yet Recruiting
22
CHRU Tours
Tours, France
Not Yet Recruiting
23
Hôpital André Mignot (CH Versailles)
Versailles, France
Not Yet Recruiting
Research Team
R
Rima Nabbout, Pr
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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