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With the advent of new treatments for ASI, new phenotypes are emerging. The investigators propose to describe these new phenotypes by prospectively following children with ASI of all types treated with TRS and aged under 16 for 2 years. The investigators also propose to evaluate potential assessment tools to determine whether they are relevant for monitoring this population, either routinely or for future clinical trials. The investigators also aim to collect the total costs associated with ASI in order to propose a first prospective medico-economic study in France.
Age
0 - 16 years
Sex
ALL
Healthy Volunteers
No
Pediatric Rehabilitation Service - L'Escale Mother and Child Hospital
Bron, Rhone, France
CHRU of Brest
Brest, France
Pediatric Neurology and Resuscitation Raymond-Poincare Hospital
Garche, France
Pediatric Neurology Swynghedauw Hospital
Lille, France
Marseille University Hospital - Timone Hospital Department of Pediatric Neurology - Specialized Pediatrics and Child Medicine
Marseille, France
I-Motion Pediatric Clinical Trial Platform Armand Trousseau Hospital
Paris, France
Hautepierre Hospital - Mother and Child Hospital
Strasbourg, France
Department of Pediatrics - Neurology and Infectious Diseases Toulouse University Hospital - Children's Hospital
Toulouse, France
Start Date
July 24, 2024
Primary Completion Date
January 24, 2029
Completion Date
January 24, 2029
Last Updated
January 30, 2026
60
ESTIMATED participants
evaluation of muscle function
OTHER
First-line cognitive assessment
OTHER
second-line cognitive assessment
OTHER
Cardiac evaluation
OTHER
MRI
RADIATION
Assessment of activity and muscle fatigue
OTHER
Assessment of bulbar function
OTHER
Evaluation of body composition and metabolism
OTHER
Questionnaires
OTHER
Biocollection
BIOLOGICAL
Skinfold measurement
OTHER
Lead Sponsor
Hospices Civils de Lyon
NCT07332702
NCT07265232
Data Source & Attribution
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Modifications: This data has been reformatted for display purposes. Eligibility criteria have been parsed into inclusion/exclusion sections. Location data has been geocoded to enable distance-based search. For the authoritative and most current information, please visit ClinicalTrials.gov.
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View ClinicalTrials.gov Terms and ConditionsNCT05824169