About this trial
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 study and will involve 120 individuals with rare-neuromuscular disorders from Norway's four health regions.
Eligibility criteria
Qualifiers
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
Disqualifiers
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
Trial design
Treatments tested in this trial
- Exercise
- Usual Care
Treatment groups
Sponsors and collaborators
Oslo University Hospital
Lead sponsor
Universitetssykehuset i Nord-Norge HF
Collaborator
Norwegian School of Sport Sciences
Collaborator
Namsos Hospital
Collaborator
Frambu Centre for Rare Disorders
Collaborator
Vigør Rehabilitation Hospital
Collaborator
Kastvollen Rehabilitation Centre
Collaborator
Norwegian University of Science and Technology
Collaborator
Haukeland University Hospital
Collaborator
Molde Hospital
Collaborator
Drammen sykehus
Collaborator
Vikersund Bad Rehabiliteringssenter AS
Collaborator
Røde Kors Haugland rehabilitation center
Collaborator