Developmental and Epileptic Encephalopathy of Genetic Etiology: Natural History Through Reuse of Clinical Data / DEE-RETRO
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Developmental and Epileptic Encephalopathy
- Sponsor
- Imagine Institute
- Enrollment
- 400
- Locations
- 23
- Primary Endpoint
- Identification of diagnostic and early predictive biomarkers of a neurodevelopmental trajectory with epileptic and developmental encephalopathies
- Status
- Recruiting
- Last Updated
- 10 months ago
Overview
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.
Investigators
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
Outcomes
Primary Outcomes
Identification of diagnostic and early predictive biomarkers of a neurodevelopmental trajectory with epileptic and developmental encephalopathies
Time Frame: Data 2002-2026
This composite outcome includes multiple diagnostic domains (Clinical, biological, radiological, genetic and electroencephalographic variables)
Secondary Outcomes
- Assessment of patients' quality of life(Data 2002-2026)
- Identification of patient subgroups presenting the identified biomarkers(Data 2002-2026)
- Assessment of autism spectrum disorders(Data 2002-2026)
- Assessment of age-related adaptive behavior(Data 2002-2026)
- Assessment of behavioral disorders(Data 2002-2026)