Personalized Training for People With Rare Neuromuscular Disorders

Launched by OSLO UNIVERSITY HOSPITAL · Nov 25, 2024

Keywords

ClinConnect Summary

This clinical trial is looking at how personalized exercise programs can help improve balance and physical function in adults with certain rare neuromuscular disorders, such as Charcot-Marie-Tooth disease, Facioscapulohumeral Muscular Dystrophy, and Myotonic Dystrophy Type 1. The researchers want to see if those who participate in these tailored exercise sessions will have better balance compared to those who only receive standard follow-up care. They will also check if any improvements in balance lead to better overall health and quality of life over time.

To be eligible for this study, participants need to be between 18 and 70 years old, have a confirmed diagnosis of one of the specified neuromuscular disorders, and be able to stand and walk at least 10 meters, even if they use aids. It's important that they can understand instructions in Norwegian and provide consent to participate. The study will involve about 120 people from different regions in Norway, and participants can expect to engage in a personalized exercise program designed to help them improve their physical abilities while being monitored for their progress and health outcomes.

Gender

ALL

Eligibility criteria

• 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