Personalized Training for People With Rare Neuromuscular Disorders

Last updated: April 23, 2025
Sponsor: Oslo University Hospital
Overall Status: Active - Recruiting

Phase

N/A

Condition

Neuropathy

Dystonias

Peripheral Neuropathy

Treatment

Exercise

Usual Care

Clinical Study ID

NCT06708468
760722
  • Ages 18-70
  • All Genders

Study Summary

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.

Eligibility Criteria

Inclusion

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 anyneed of assistive devices

  • Indication for rehabilitation as confirmed by the treating neurologist orphysiotherapist

  • Ability to understand and follow instructions in Norwegian

  • Capable of giving signed informed consent

Exclusion

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 cancertreatment

  • Alcohol or drug abuse as per their medical chart

  • History of non-compliance to medical advice/follow-up

Study Design

Total Participants: 120
Treatment Group(s): 2
Primary Treatment: Exercise
Phase:
Study Start date:
December 13, 2024
Estimated Completion Date:
December 31, 2028

Connect with a study center

  • Haukeland University Hospital

    Bergen, 5021
    Norway

    Site Not Available

  • Vestre Viken Hospital (Drammen Hospital)

    Drammen, 3004
    Norway

    Site Not Available

  • Røde Kors Haugland Rehabiliteringssenter

    Flekke, 6968
    Norway

    Site Not Available

  • Helse Møre and Romsdal HF (Molde Hospital)

    Molde,
    Norway

    Site Not Available

  • Namsos Hospital

    Namsos, 7803
    Norway

    Site Not Available

  • Norges idrettshøgskole

    Oslo, 0863
    Norway

    Site Not Available

  • Oslo University Hospital

    Oslo, 0424
    Norway

    Active - Recruiting

  • Frambu Senter for sjeldne funksjonshemninger

    Siggerud, 1404
    Norway

    Site Not Available

  • Kastvollen Rehabiliteringssenter

    Steinkjer, 7670
    Norway

    Site Not Available

  • University Hospital of North Norway

    Tromsø, 9038
    Norway

    Active - Recruiting

  • Vigør Rehabiliteringssykehus (Rehabiliteringssenteret Nord-Norges Kurbad)

    Tromsø, 9011
    Norway

    Site Not Available

  • Vikersund Bad Rehabiliteringssenter

    Vikersund,
    Norway

    Site Not Available

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