Real-life follow-up of rare epilepsies in children and adolescents

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This multicentre, observational follow-up collects real-world data on children and adolescents with rare epileptic syndromes diagnosed using ORPHA codes. The study records treatment responses and the course of cognitive and psychiatric comorbidities during routine care. Data are gathered at declared participating centers in France to help define prognostic factors and inform clinical management. The project also aims to provide real-life outcome measures that could improve endpoints for future therapeutic trials.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Diagnosis for rare epilepsy (based on ORPHA codes)
* holders of parental authority not opposed
* Be followed in one of the declared centers of the study

Exclusion Criteria:

* opposition from the holders of parental authority or the patient

Where it's running

• CHU Angers
  Angers, France Recruiting
• CHU de Bordeaux
  Bordeaux, France Recruiting
• CHU de Brest - Hôpital de la Cavale Blanche
  Brest, France Recruiting
• CHRU Lille
  Lille, France Recruiting
• HFME - HospiceS Civils De Lyon
  Lyon, France Recruiting
• Hôpital La Timone - APHM
  Marseille, France Recruiting

Study contacts

• Study coordinator: Blandine DOZIERES, Dr
• Email: blandine.dozieres@aphp.fr
• Phone: 0140033667

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.