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

Recruiting now

Conditions studied: Epilepsy, West Syndrome, Dravet Syndrome

In brief

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 very few randomised trials except for 3 rare epilepsies (infantile spasm syndrome, Dravet syndrome, Lennox-Gastaut syndrome). This has led to the virtual absence of management recommendations, including for the three syndromes mentioned above, where attempts at treatment algorithms have been proposed, although these have not been able to be considered as evidence-based recommendations. As a result, there is some diversity in the management of rare epilepsies from one centre to another. However, this diversity in management can be an asset in a real-life study. This will make it possible to compare different management methods, both in terms of seizure control and medium-term outcome.

Key facts

Study ID

NCT05126914

Run by

Assistance Publique - Hôpitaux de Paris

People needed

1000

Starts

2025-12-11

Expected to finish

2028-12-01

Last updated by the study team

2026-02-24

Who can join

Age: any, up to 15. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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

You may not qualify if…

• opposition from the holders of parental authority or the patient

Where it is running

• CHU Angers — Angers, France (enrolling)
• CHU de Bordeaux — Bordeaux, France (enrolling)
• CHU de Brest - Hôpital de la Cavale Blanche — Brest, France (enrolling)
• CHRU Lille — Lille, France (enrolling)
• HFME - HospiceS Civils De Lyon — Lyon, France (enrolling)
• Hôpital La Timone - APHM — Marseille, France (enrolling)
• Hôpital Necker - APHP — Paris, France (enrolling)
• Hopital Robert Debré - Neurologie — Paris, France (enrolling)
• CHU Strasbourg- Hôpital de Hautepierre — Strasbourg, France (enrolling)
• Hôpital Purpan - CHU de Toulouse — Toulouse, France (enrolling)
• CHU de Tours - hôpital Clocheville — Tours, France (enrolling)

Full record on ClinicalTrials.gov

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