Personalized exercise for adults with rare nerve and muscle diseases
Tests personalized exercise for balance in adults with Charcot-Marie-Tooth, FSHD or myotonic dystrophy.
Key facts
- Who runs it
- Oslo University Hospital
- Where
- Norway5 sites in 1 countryChoose a country to see its sites
- Trial code
- Registry title
- Personalized Training for People With Rare Neuromuscular Disorders
- Status
- Recruiting
- People taking part
- 120 people, planned
- Started
- 13 Dec 2024
- Expected to end
- Dec 2028
- Type of study
- Interventional, 2 groupsOne group gets an existing treatment, for comparison.
- Treatments tested
- Exercise
- Usual Care
- Record updated
- 18 June 2026
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for adults with CMT, FSHD or DM1 who can stand and walk. It compares a personalized exercise program with usual care.
- Age
- 18 to 70 years at the time of signing consent.
- Sex
- Any gender can join.
- Disease stage
- A confirmed diagnosis of FSHD, DM1 or CMT. People must be able to stand, rise from a chair and walk at least 10 meters, with or without walking aids. The treating neurologist or physiotherapist must confirm a need for rehabilitation.
Main reasons for not taking part
- Being pregnant or planning to become pregnant
- Other disorders that affect physical capacity, such as disabling arthritis, severe heart failure or heart muscle disease, or ongoing cancer treatment
- Alcohol or drug abuse noted in the medical chart
- A history of not following medical advice or follow-up
- Not able to understand and follow instructions in Norwegian
The registry criteria, word for word
Show all 11 criteriaShow less
Who can take part
- 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
Who cannot take part
- Alcohol or drug abuse as per their medical chart
- Any other neurological or non-neurological disorders affecting physical capacity, such as disabling arthritis, severe heart-failure/cardiomyopathy, on-going cancer treatment
- History of non-compliance to medical advice/follow-up
- Pregnancy or planning to become pregnant
Check if you might fit
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 18 and 70 years old?
This trial has no sites in United States.
It has sites in one country. Choose a country to see its sites.
About the trial
What the trial wants to find out
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).
Read full original descriptionShow less
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.
The 2 groups in the trial
- InterventionTreatment being tested
The experimental group receives four-months of exercise-based intervention
Treatment: Exercise
- ControlExisting treatment, for comparison
The control group follows usual care
Treatment: Usual Care
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Personalized Exercise Training for People With Rare Neuromuscular Disorders: a Multi-center, Evaluator-blinded, Two Arm, Randomized Controlled Study to Assess the Effects on Physical Function From Personalized Strength and Balance Exercise in a Rehabilitation Setting.
- Plain-language title
- Personalized exercise for adults with rare nerve and muscle diseasesGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 14 November 2026.
- Fit questions
- Built from NCT06708468, who can take part
- Record updated
- 18 June 2026