Personalized exercise treatment for adults with rare neuromuscular disorders
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.
Run by Oslo University Hospital · NCT06708468 · Data updated 2026-11-12
This study is testing if a personalized exercise program can help adults with rare neuromuscular disorders improve their balance and physical function better than regular care.
Quick facts
| Study type | Interventional |
|---|---|
| Ages | 18 Years to 70 Years |
| Sex | All |
| Enrollment | 120 (estimated) |
| Sponsor | Oslo University Hospital Academic / other |
| Locations | 5 sites (Bergen and 4 other locations) |
| Status | Recruiting |
| Started | December 13, 2024 |
| Main results expected | December 2027 |
| Study ends | December 2028 |
| Registry record updated | June 18, 2026 |
| Trial ID | NCT06708468 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are adults aged 18-70 with a confirmed diagnosis of FSHD, DM1, or CMT who are capable of basic mobility.
✕Probably not a fit
Patients with other significant neurological or non-neurological disorders affecting physical capacity may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study investigates the effects of personalized exercise treatment on dynamic balance and physical function in adults with rare neuromuscular disorders, specifically Charcot-Marie-Tooth disease, Facioscapulohumeral muscular dystrophy, and Myotonic Dystrophy Type 1. Participants will be divided into an intervention group receiving tailored exercise programs and a control group receiving usual care. The study aims to determine if the personalized training leads to superior improvements in dynamic balance and other health indicators compared to standard follow-up. The research will involve 120 individuals from various health institutions across Norway.
Why it matters
Potential benefit: If successful, this study could enhance physical function and quality of life for patients with rare neuromuscular disorders.
How similar studies have gone: While personalized exercise interventions have shown promise in other populations, this specific approach for rare neuromuscular disorders is relatively novel.
Who can join: the full rules
Show full inclusion / exclusion 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
Where it's running
-
Oslo University Hospital
Oslo, Norway Recruiting -
University Hospital of North Norway
Tromsø, Norway Recruiting -
Haukeland University Hospital
Bergen, Norway Not yet recruiting -
Helse Møre and Romsdal HF (Molde Hospital)
Molde, Norway Not yet recruiting -
Namsos Hospital
Namsos, Norway Not yet recruiting
Study contacts
- Principal investigator: Kristin Ørstavik, MD, PhD — Oslo University Hospital
- Study coordinator: Kristin Ørstavik, MD, PhD
- Email: krorstav@ous-hf.no
- Phone: +4792422126
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.