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

Launched by ASSISTANCE PUBLIQUE - HÔPITAUX DE PARIS · Nov 8, 2021

Keywords

ClinConnect Summary

This clinical trial is looking at how children and adolescents with rare forms of epilepsy, such as West Syndrome and Dravet Syndrome, respond to different treatments in real-life situations. Currently, there isn’t a lot of information about how these conditions progress or the best ways to manage them, which makes it challenging for families to understand what to expect. The study aims to gather valuable data about treatment responses and how these rare epilepsies affect cognitive and mental health over time. This will help improve future care and support for patients.

To participate in this study, children must have a diagnosed rare epilepsy and be under the care of one of the participating centers. Parents or guardians need to be on board with their child joining the study. Participants will have the opportunity to share their experiences with different treatment options, and their progress will be monitored over time. This information will be crucial for developing better treatment guidelines in the future. The study is not yet recruiting participants, but it represents a significant step toward understanding and improving care for these rare conditions.

Gender

ALL

Eligibility criteria

• 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