An interventional study of Exercise and Usual Care in Neuromuscular Diseases (NMD), Charcot Marie Tooth Disease (CMT) and Facioscapulohumeral Muscular Dystrophy, sponsored by Oslo University Hospital. Recruiting at 5 sites in Norway. Open to participants aged 18 Years to 70 Years. Per ClinicalTrials.gov, last updated 2026-06-18.
Sponsored by Oslo University Hospital · Not applicable, Interventional, and Treatment
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:
This is a national study and will involve 120 individuals with rare-neuromuscular disorders from Norway's four health regions.
361 studies on the registry are indexed under Neuromuscular Diseases; 97 are open to participants now.
This study's planned enrollment of 120 is above the median of 30 across 204 interventional studies indexed under Neuromuscular Diseases.
Browse Neuromuscular Diseases studies →Oslo University Hospital is the lead sponsor of 834 studies on the registry; 149 are open to participants now.
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Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
The experimental group receives four-months of exercise-based intervention
Other: Exercise
The control group follows usual care
Other: Usual Care
The intervention includes 12-day personalized exercise program set in a rehabilitation center, followed by a three-month digital intervention and then a second 12-day personalized exercise program in a rehabilitation center.
Also known as: Personalized Exercise
Usual care includes appointments at hospitals and in the community health system according to what has been recommended to that individual
Dynamic balance assessed using Mini-Balance Evalulation Systems Test (Mini-BESTest)
The primary outcome measure will be change in dynamic balance from pre-intervention to post-intervention. In addition, there will be two follow-up assessments.
Time frame: Baseline, 4-month (primary), follow-up at 10-month and 16-month (only interventiongroup)
Fatigue severity scale
Measurements of fatigue, 9 questions on a scale from 1 to 7. And a visual analogue fatigue scale
Time frame: Baseline, 4-month, 10-month and 16-month (only intervention-group)
Clinical measures of strength and function
manual muscle testing, 30-s sit-to-stand, functional strength of neck and trunk, arm and hand function (9-HPT, Box and Block), walking function (10-mWT and 100-mTT), grip and pinch strength using dynamometers.
Time frame: Baseline 4-month, 10-month and 16-month (only intervention group)
Global Metabolomics
dried blood samples for extracting signal metabolites of known importance in characterizing the metabolic status (e.g. lactate, amino acids, and fatty acids)
Time frame: Baseline, 4-month, 10-month
Dual Energy X-ray Absorptiometry
body composition from different regions of the body
Time frame: 4-month, 10-month and 16-month
Neuromuscular ultrasound
Ultrasound imaging of selected muscles in the trunk, upper- and lower extremities scored using visual and/or quantitative grey-scale echogenicity analysis tools. Only collected in participants with FSHD and DM1.
Time frame: 4-month, 10-month and 16-month
Physical activity
tri-axial AX3 accelerometers, and monitoring pain, and activity and sleep diaries. Only collected in participants from Helse Sør-Øst.
Time frame: 4-month, 10-month and 16-month
Motor unit number estimation
Estimating the number of motor units using non-invasive peripheral nerve stimulation and surface electromyography recordings. Only for participants with CMT at Helse Sør-Øst.
Time frame: Baseline 4-month, 10-month and 16-month (only intervention-group)
ABC-scale
Activities- specific balance confidence scale.
Time frame: Basleine, 4 month, 10 month, 16 month (only intervention group)
PROMIS-29
Questionnaire with 7 domains and a numeric rating scale
Time frame: Baseline, 4 month, 10 month and 16 month (only intervention group)
Plan to share: Undecided
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