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Personalized Training for People With Rare Neuromuscular Disorders

RecruitingNAAges 18 Years - 70 YearsAllOslo University Hospital
NCT06708468 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

The goal of this study is to investigate the effects of personalized exercise treatment on dynamic balance and physical function in comparison with regular follow-up in adults with rare-neuromuscular disorders: Charcot-Marie-Tooth (CMT), Facioscapulohumeral Muscular Dystrophy (FSHD), and Myotonic Dystrophy Type 1 (DM1). The key objectives are: 1. To investigate if the intervention group experiences improvements in dynamic balance that are superior to the control group 2. To investigate if the intervention group experiences long-term improvements in dynamic balance that are superior to the control group during the follow-up 3. To investigate if improvements in dynamic balance are associated with improvements in physical activity, body composition, estimated motor units, metabolomics, muscle echnogenecity and volume, and other indicators of health and quality of life. This is a national

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📋 Eligibility rules (as published)
Inclusion Criteria: * A confirmed diagnosis of either FSHD, DM1 or CMT * 18-70 years of age at the time of signing the informed consent. * Any gender * Ability to stand, rise from a chair and walk at least 10 meters with or without any need of assistive devices * Indication for rehabilitation as confirmed by the treating neurologist or physiotherapist * Ability to understand and follow instructions in Norwegian * Capable of giving signed informed consent Exclusion Criteria: * Pregnancy or planning to become pregnant * Any other neurological or non-neurological disorders affecting physical capacity, such as disabling arthritis, severe heart-failure/cardiomyopathy, on-going cancer treatment * Alcohol or drug abuse as per their medical chart * History of non-compliance to medical advice/follow-up
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What it tests

  • Exercise
  • Usual Care
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Where

5 sites
Haukeland University Hospital
Bergen, Norway
Helse Møre and Romsdal HF (Molde Hospital)
Molde, Norway
Namsos Hospital
Namsos, Norway
Oslo University Hospital
Oslo, Norway
University Hospital of North Norway
Tromsø, Norway
🤝 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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