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SMAdult - Monitoring of Movement on Spinal Muscular Atrophy

RecruitingNAAges 15 Years - anyAllCentre Hospitalier Universitaire de Liege
NCT07894185 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

Spinal muscular atrophy (SMA) is a rare neuromuscular disease causing progressive muscle weakness related to degeneration of motor neurons. With the arrival of new treatments, the natural history of SMA is changing significantly, and treatments in adults have been associated with disease stabilization and a reduction in fatigue. However, functional assessment of adult patients remains difficult: their motor performance is highly fluctuating and hospital-based tests incompletely capture these daily variations. Wearable devices, such as Syde®, now allow continuous monitoring in real life. The Syde® device, already used in Duchenne muscular dystrophy, provides digital measures describing gait and overall motor activity. However, no fully validated digital measure currently exists in adults with SMA. The SMAdult study aims to address this gap through a precise, longitudinal, and fully dece

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📋 Eligibility rules (as published)
Inclusion Criteria: * Patient with genetically confirmed spinal muscular atrophy and available SMN2 copy number or if unavailable, they will be offered the option to send a DBS (dried blood spot) for SMN2 copy evaluation. * On stable Disease modifying treatment for at least one year. * The participant must be willing and able to provide written informed consent for study participation. * Aged 15 years or older. Exclusion Criteria: * Any acute or chronic condition that, in the investigator's opinion, significantly interferes with assessments and/or motor development. * Participation in a therapeutic trial with unapproved treatment. * absence of internet connection.
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What it tests

  • wearable sensors
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Where

1 site
Centre de référence des maladies neuromusculaires, Centre Hospitalier Régional de la Citadelle
Liège, Belgium
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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