Personalized Training for People With Rare Neuromuscular Disorders
Recruiting now · Not applicable
Conditions studied: Neuromuscular Diseases (NMD), Charcot Marie Tooth Disease (CMT), Facioscapulohumeral Muscular Dystrophy, Myotonic Dystrophy Type 1 (DM1)
In brief
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.
Key facts
- Study ID
- NCT06708468
- Run by
- Oslo University Hospital
- People needed
- 120
- Starts
- 2024-12-13
- Expected to finish
- 2028-12-01
- Last updated by the study team
- 2026-06-18
Who can join
Age: 18 and older, up to 70. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- 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
Where it is running
- Oslo University Hospital — Oslo, Norway (enrolling)
- University Hospital of North Norway — Tromsø, Norway (enrolling)
- Haukeland University Hospital — Bergen, Norway
- Helse Møre and Romsdal HF (Molde Hospital) — Molde, Norway
- Namsos Hospital — Namsos, Norway
Full record on ClinicalTrials.gov
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