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Rust Roest: wat kunnen we winnen aan functionaliteit met training bij jongens met Duchenne spierdystrofie?

No Use is Disuse: what can we gain upon functionality with exercise in boys with Duchenne Muscular Dystrophy?

Status
Recruiting
Phases
Unknown
Study type
Interventional
Source
NL-OMON
Registry ID
NL-OMON23036
Enrollment
40
Registered
2009-01-15
Start date
2009-02-01
Completion date
Unknown
Last updated
2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Duchenne Muscular Dystrohy (DMD), dynamic training, functional training, In Dutch: Duchenne spierdystrofie, dynamische training, functionele training

Interventions

The intervention of study 1 will consist of a low-to-moderate intensity dynamic exercise training. The control group will get the same training intervention after the waiting period. The intervention

Sponsors

Radboud University Nijmegen Medical Centre, department of Rehabilitation and department of Clinical Neurophysiology
Lead Sponsor

Eligibility

Inclusion criteria

Inclusion criteria: Study 1 'Dynamic leg and arm exercise training for ambulant or recently wheelchair confined boys with DMD': 1. DNA established diagnosis of DMD; 2. Boys who are at the end of their ambulation, and; 3. Need more than 5 seconds to get up from the floor or are not able to raise from the floor, and/or; 4. Are not able to bicycle without assistance, and/or; 5. Are wheelchair dependent to move over long distance (more than 500m); 6. Boys who are recently wheelchair confined (approximately 1-2 years after they've stopped walking) and; 7. Are able to stand (un)supported; 8. Are able to touch the top of their head with both hands without assistance. Study 2 'Functional training with arm support for boys with DMD who have been wheelchair confined for several years': 1. DNA established diagnosis of DMD; 2. Boys who have been wheelchair confined for a few years (approximately 2-5 years after stop walking); 3. Boys who have problems with lifting their arms and reaching, and; 4. Are unable to touch the top of their head (at least one hand); 5. Are able to use their hands for daily activities; 6. Experience difficulties in lifting their arms and reaching.

Exclusion criteria

Exclusion criteria: Study 1: 1. Other disabling diseases influencing mobility; 2. Boys with a clinical symptomatic cardiomyopathy; 3. Boys 20 years old; 4. Boys who already use an arm support.

Design outcomes

Primary

MeasureTime frame
Primary outcomes for study 1 will be muscle endurance and functional abilities, as assessed with with bicycle ergometry and the Motor Function Measure (MFM). The primary outcome for study 2 will be functional abilities of the upper extremity (reaching and lifting), as assessed with the Action Research Arm test (ARA).

Secondary

MeasureTime frame
Secondary outcomes for both studies will be at the level of body functions and structures (e.g. muscle tissue), activities (e.g. activities in daily life) and participation (e.g. health related quality of life).

Contacts

Public ContactMerel Jansen

UMC St Radboud Reinier Postlaan 4

m.jansen@reval.umcn.nl+31 (0)24 3668195

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)