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HOMERUN
Initiation of HOme MEchanical ventilation at home in a selective group of patients with chronic hypercapnic Respiratory failUre in the Netherlands

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…

Observational Prolonged Trial in Myotonic Dystrophy type 1 to Improve Qol Standards, a Taget Identification Collaboration.

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…

Initiation of chronic ventilatory support outside the hospital.

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…

A randomized clinical trial of group medical appointments for patients with chronic neuromuscular disease. A comparison with usual care in terms of quality of life and cost-effectiveness

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.

*Personalized orthotic care to improve functioning in patients with neuromuscular disorders*

To assess the effectiveness and cost-effectiveness of personalized orthotic care to improve functioning in patients with NMD compared to standard orthotic care.