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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patient | Patient inclusion criteria:
Criteria for non-inclusion of patients:
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| Control patient | Inclusion criteria for controls:
Criteria for non-inclusion of controls :
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| Measure | Description | Time Frame |
|---|---|---|
| Identification of diagnostic and early predictive biomarkers of a neurodevelopmental trajectory with epileptic and developmental encephalopathies | This composite outcome includes multiple diagnostic domains (Clinical, biological, radiological, genetic and electroencephalographic variables) | Data 2002-2026 |
| Measure | Description | Time Frame |
|---|---|---|
| Identification of patient subgroups presenting the identified biomarkers | To identify patient subgroups, correlation analyses will be carried out to highlight any common clinical, biological, genetic, radiological and electroencephalographic findings. | Data 2002-2026 |
| Assessment of patients' quality of life |
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Inclusion Criteria:
Exclusion Criteria:
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Patient diagnosed with developmental encephalopathy and epilepsy.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Rima Nabbout, Pr | Contact | +33144381536 | rima.nabbout@aphp.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Amiens | Not yet recruiting | Amiens | France |
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The SF-12 questionnaire is used to assess quality of life. |
| Data 2002-2026 |
| Assessment of age-related adaptive behavior | To assess the age of adaptive behavior, the Vineland II scale is the reference test. | Data 2002-2026 |
| Assessment of behavioral disorders | The CBCL (Child Behaviour Checklist) questionnaire is the reference test for assessing behavioural problems. | Data 2002-2026 |
| Assessment of autism spectrum disorders | The Social Communication Questionnaire (SCQ) will be used to assess autism spectrum disorders. | Data 2002-2026 |
| CH Angers | Not yet recruiting | Angers | France |
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| Chu Besancon | Not yet recruiting | Besançon | France |
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| CHU Bordeaux | Not yet recruiting | Bordeaux | France |
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| CHRU Brest | Not yet recruiting | Brest | France |
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| CHU Clermont-Ferrand | Not yet recruiting | Clermont-Ferrand | France |
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| CHU Grenoble | Not yet recruiting | Grenoble | France |
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| CHU Lille | Not yet recruiting | Lille | France |
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| CHU Limoges | Not yet recruiting | Limoges | France |
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| CHU Lyon HCL | Not yet recruiting | Lyon | France |
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| Assistance Publique Hopitaux de Marseille | Not yet recruiting | Marseille | France |
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| CHU de Nancy | Not yet recruiting | Nancy | France |
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| Hopitaux Pediatriques de Nice CHU Lenval | Not yet recruiting | Nice | France |
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| Necker-Enfants Malades Hospital | Recruiting | Paris | 75015 | France |
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| CHU Pitié Salpétrière | Not yet recruiting | Paris | France |
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| CHU Robert Debré | Not yet recruiting | Paris | France |
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| Hôpital Armand Trousseau | Not yet recruiting | Paris | France |
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| Chu Reims | Not yet recruiting | Reims | France |
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| CHU Rennes | Not yet recruiting | Rennes | France |
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| CHU Strasbourg | Not yet recruiting | Strasbourg | France |
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| CHU Toulouse | Not yet recruiting | Toulouse | France |
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| CHRU Tours | Not yet recruiting | Tours | France |
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| Hôpital André Mignot (CH Versailles) | Not yet recruiting | Versailles | France |
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