47 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 measurement properties and feasibility of the self-report Northwestern Ego-Integrity Scale in patients with ALS (or its variants PMA and PLS)
The present protocol addresses these issues, with a systematic approach where we first assess optimal settings for BCI, and then test the quality of BCI application in adequately sized groups of subjects. The whole project is aimed at obtaining a…
1. To determine the reproducibility of the ECWT and the 6MWT to assess the physical strain of walking in patients with PPS and in healthy control subjects.2. To evaluate the one-year course of the physical strain of walking among patients with PPS…
To investigate whether the CVS patients show the muscle membrane disturbances, as the FMS patients do. That is, are there muscle conduction velocities disturbances in the CVS patients?
To evaluate the effectiveness and cost-effectiveness of Energetic. Secondary objectives include evaluation of barriers and facilitators for implementation of Energetic in other settings.
Shoulder load and daily activities compared between power assisted and manual wheelchair propulsion.
The primary objective is to compare forces and moments acting on the shoulder of manual wheelchair users during power assisted wheelchair propulsion and manual wheelchair propulsion and the perceived upper extremity load. The secondary objectives…
In this study we want to investigate if relaxation time (RT) measured by handgrip myometry and muscle- elastography is a reliable outcome measurement for the quantification of myotonia in NDM patients. Mean RT values en standard deviations of NDM…
Within this complete European consortium animal models as well as patient material are utilized, in order to uncover the pathogenic pathways in OPMD that are at the centre of the disease, eventually in order to design rational evidence based…
The objective of this study is to learn from young people with a chronic illness (diabetes or progressive muscular disease) who have found a balance between taking good care of their illness and having a good life. This study examines how these…
1. To determine the reproducibility and sensitivity of the EC of walking test in boys with DMD, in comparison with the reproducibility and sensitivity of the 6MWT. 2. To evaluate the one-year course of limitations in ambulation among boys with DMD,…
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…
To investigate the validity the dynamometer the KinCom in comparison to the Biodex dynamometer.
There are some unresolved issues that we intend to address in this project. We will examine 1) whether with locating the motorcortex with functional MRI, the best location of the electrodes can be predetermined, 2) how brain activity changes in the…
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.
Main objective Because this study will include young children (0-3 years old) the challenge is to measure isometric muscle force adjusted to their natural behavior. From 4 months old a child can pull a toy towards himself. Therefore we want to use…
The main objective of this prospective population based cohort study of patients with KD in the Netherlands and Flemish part of Belgium is to perform multiple tests (i.e. clinical and blood) and genomic profiling to discover possible biomarkers for…
To gain insight in the agreement and differences between patient and proxy respondents when assessing the health status of the patient en the factors that could be of influence.
1. Description of the epidemology of dystrophinopathies in the Netherlands2. Description of the natural course of dystrophinopathies in the Netherlands and the influence of medical development on it.3. The initiation of a database for patients…