Civil Hospices of Lyon
Spinal muscular atrophy is a hereditary motorneuron disease caused by a mutation of the SMN1 gene, which is at the origin of a progressive limb and axial motor deficiency. It concerns 1200 individuals in France, including 700 adults in 2018. The main objective of this study is to assess the quality of life of SMA patients in France. The secondary objectives are, in one hand, to compare the quality of life of SMA patients to a population of neuromuscular diseases patients. And on the other hand to evaluate the determinants of participation and the impact of participation on quality of life in adult SMA patients.
Spinal Muscular Atrophy
SMA adult patients
Study Type : | Observational |
Estimated Enrollment : | 175 participants |
Official Title : | Specificities of Quality of Life and Influence of Participation on the Quality of Life of the Adult With Spinal Muscular Atrophy in France: a Cross-sectional Study |
Actual Study Start Date : | October 19, 2022 |
Estimated Primary Completion Date : | October 19, 2024 |
Estimated Study Completion Date : | October 19, 2024 |
Information not available for Arms and Intervention/treatment
Ages Eligible for Study: | 18 Years to 85 Years |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.
Not yet recruiting
L'Escale Service - Physical Medicine and Pediatric Rehabilitation Eastern Hospital Group of Hospices Civils de Lyon
Bron, France, 69500
Recruiting
VUILLEROT Carole
Bron, France, 69500