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Clinical Trial Summary

Number of centres planned : 16 centres in France Type of study / Study design : Research Involving the Human Person category 2. Multicentric. Prospective Planning of the study : Total duration: 22 years. Recruitment period: 24 months. Follow-up time per patients : 20 years Expected number of cases : 300 index cases: 150 single index cases and 150 trio families Treatment, procedure, combination of procedures under consideration : - Blood samples for genetic analyses collected at the inclusion visit for patients and parents in case of trio families Schedule of different visits and examinations : Inclusion visit: - Collection of demographic, clinical data from the index case and parents - DNA sampling for genetic research (biocollection) of the index case or family trio - Completion of the quality of life questionnaire Annual visit with a 20 year follow-up: - Retrieval of data from the index case - Completion of the quality of life questionnaire


Clinical Trial Description

n/a


Study Design


Related Conditions & MeSH terms


NCT number NCT05330338
Study type Interventional
Source Nantes University Hospital
Contact Alban Baruteau
Phone 02 40 08 77 42
Email albanelouen.baruteau@chu-nantes.fr
Status Recruiting
Phase N/A
Start date September 7, 2022
Completion date August 1, 2043

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