Personalized Training for People With Rare Neuromuscular Disorders

Trial statusRecruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age18-70
SponsorOslo University Hospital

About this trial

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

Qualifiers

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

Disqualifiers

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

Trial design

Treatments tested in this trial

  • Exercise
  • Usual Care

Treatment groups

120 Participants
are divided into 2 treatment groups

Sponsors and collaborators

Oslo University Hospital

Lead sponsor

Universitetssykehuset i Nord-Norge HF

Collaborator

Norwegian School of Sport Sciences

Collaborator

Namsos Hospital

Collaborator

Frambu Centre for Rare Disorders

Collaborator

Vigør Rehabilitation Hospital

Collaborator

Kastvollen Rehabilitation Centre

Collaborator

Norwegian University of Science and Technology

Collaborator

Haukeland University Hospital

Collaborator

Molde Hospital

Collaborator

Drammen sykehus

Collaborator

Vikersund Bad Rehabiliteringssenter AS

Collaborator

Røde Kors Haugland rehabilitation center

Collaborator