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.
Exclusion Criteria:
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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Oslo University Hospital