Actively Recruiting
Personalized Training for People With Rare Neuromuscular Disorders
Led by Oslo University Hospital · Updated on 2025-04-27
120
Participants Needed
5
Research Sites
207 weeks
Total Duration
On this page
Sponsors
O
Oslo University Hospital
Lead Sponsor
U
Universitetssykehuset i Nord-Norge HF
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Personalized Training for People With Rare Neuromuscular Disorders
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Confirmed diagnosis of FSHD, DM1, or CMT
- Age between 18 and 70 years at informed consent
- Any gender
- Ability to stand, rise from a chair, and walk at least 10 meters with or without assistive devices
- Indication for rehabilitation confirmed by a neurologist or physiotherapist
- Ability to understand and follow instructions in Norwegian
- Capable of giving signed informed consent
You will not qualify if you...
- Pregnancy or planning to become pregnant
- Other neurological or non-neurological disorders affecting physical capacity, such as disabling arthritis, severe heart failure or cardiomyopathy, ongoing cancer treatment
- Alcohol or drug abuse according to medical records
- History of non-compliance with medical advice or follow-up
AI-Screening
AI-Powered Screening
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Trial Site Locations
Total: 5 locations
1
Haukeland University Hospital
Bergen, Norway, 5021
Not Yet Recruiting
2
Helse Møre and Romsdal HF (Molde Hospital)
Molde, Norway
Not Yet Recruiting
3
Namsos Hospital
Namsos, Norway, 7803
Not Yet Recruiting
4
Oslo University Hospital
Oslo, Norway, 0424
Actively Recruiting
5
University Hospital of North Norway
Tromsø, Norway, 9038
Actively Recruiting
Research Team
K
Kristin Ørstavik, MD, PhD
CONTACT
H
Hanne L Fossmo, PhD stud
CONTACT
How is the study designed?
Study Type
INTERVENTIONAL
Masking
SINGLE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
TREATMENT
Number of Arms
2
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