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Multicentre Real-life Follow-up Study of Rare Epileptic Syndromes in Children and Adolescents

Recruitingn/aAges any - 15 YearsAllAssistance Publique - Hôpitaux de Paris
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In plain words

What the trial is, and whether it could suit you

Rare epilepsies as a whole account for 20-30% of epilepsies, but knowledge about prognostic factors is currently limited. This means that it is difficult to provide adequate information to families at diagnosis and during follow-up. Prognostic factors are also important for management as they can have an impact on the patient's outcome (time to intervention, choice of one molecule over another, etc.). Finally, few treatments are currently available for these epilepsies. One of the limitations to the development of treatments is the lack of real life data as it is difficult to create reliable primary endpoints such as the rate of patients becoming seizure free naturally compared to a therapeutic intervention. The aim of this real-life study is to evaluate the response to treatment as well as to see the evolution of cognitive and psychiatric comorbidities. As explained above, there are ve

Sign in to get the eligibility rules as simple questions to take to your doctor.

📋 Eligibility rules (as published)
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
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What it tests

  • Not listed
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Where

11 sites
CHU Angers
Angers, France
CHU de Bordeaux
Bordeaux, France
CHU de Brest - Hôpital de la Cavale Blanche
Brest, France
CHRU Lille
Lille, France
HFME - HospiceS Civils De Lyon
Lyon, France
Hôpital La Timone - APHM
Marseille, France
Hôpital Necker - APHP
Paris, France
Hopital Robert Debré - Neurologie
Paris, France

…and 3 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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