Follows children with rare epilepsy syndromes through real-life care
Follows children and teens with rare epilepsies, including West syndrome and Dravet syndrome, over time.
Plain-language title generated from the registry record
Registry title: Multicentre Real-life Follow-up Study of Rare Epileptic Syndromes in Children and Adolescents
Key facts
- Where
- Angers, Bordeaux, Brest, Lille, Lyon, Marseille, Paris, Strasbourg, Toulouse, and Tours, FranceSee the 11 sites
Where in France
- CHU AngersAngers, FranceTaking people
- CHU de BordeauxBordeaux, FranceTaking people
- CHU de Brest - Hopital de la Cavale BlancheBrest, FranceTaking people
- CHRU LilleLille, FranceTaking people
- HFME - HospiceS Civils De LyonLyon, FranceTaking people
- Hôpital La Timone - APHMMarseille, FranceTaking people
- Hôpital Necker - APHPParis, FranceTaking people
- Hopital Robert Debré - NeurologieParis, FranceTaking people
- CHU Strasbourg - Hôpital de HautepierreStrasbourg, FranceTaking people
- Hôpital Purpan - CHU de ToulouseToulouse, FranceTaking people
- CHU de Tours - Hôpital ClochevilleTours, FranceTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Assistance Publique - Hôpitaux de Paris
- Trial code
- NCT05126914
- Record updated
- 24 February 2026
- Original description
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.Read full original descriptionShow less
Multicentre Real-life Follow-up Study of Rare Epileptic Syndromes in Children and Adolescents
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.
Inclusion: 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: opposition from the holders of parental authority or the patient.