10 results
Patients with chronic respiratory failure currently start their ventilatory support in hospital as stated in national guideline. However, as these patients are severely disabled, a stay at the hospital for several days is experienced by many as very…
To evaluate the effectiveness and cost-effectiveness of Energetic. Secondary objectives include evaluation of barriers and facilitators for implementation of Energetic in other settings.
To compare group medical appointment as a novel approach in care for chronic neuromuscular patients with conventional outpatient visits, in terms of health outcomes and costs.
Primary ObjectiveTo evaluate the effect of a tailored behavioral change intervention comprising CBT and physical activity on participation (as measured by the DM1-Activ scale) for severely fatigued patients with myotonic dystrophy type 1 compared to…
We want to investigate if it is possible to set up the entire process of home mechanical ventilation outside the hospital. This means practically that the patients will not be admitted to the hospital. The goal of this study is to answer the…
The purpose of ALS-CarE is to make a population based inventory of the ALS patient and caregiver health care programme over the different stages of the disease. The obtained information can be used in the future to adjust and fine tune the current…
Primary- To determine the validity of home-based self-monitoring of VC in patients with MND.Secondary- To determine the reliability of home-based self-monitoring of VC in patients with MND.- To evaluate the feasibility of 4-weekly home-based self-…
Primary: To determine the feasibility of measuring muscle strength at home with the fixed dynamometerSecondary: Determining the sensitivity of the fixed dynamometer to detect changes in disease progression in ALS during home measurement
Primary objective: To assess the feasibility and adherence of home-based monitoring of multiple aspects of disease progression in patients with ALS in order to develop a widely supported set of reliable digital parameters to capture data, collected…
To assess the effectiveness and cost-effectiveness of personalized orthotic care to improve functioning in patients with NMD compared to standard orthotic care.