Résumé :
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While new therapies for neuromuscular disorders are being investigated, it is also important to develop new tools to quantify the potential effects of such therapies. Devices recording the patient’s daily physical activity in their natural environment are increasingly being used in several fields of medicine, with only a few reports in neuromuscular disorders. In this symposium we will present and discuss the preliminary results of an ongoing study we are conducting using a custom made miniaturized data logger (ASUR-Autonomous Sensing Unit Recorder) composed of a 3D accelerometer and a gyroscope fixed on the patients’ trunk. The physical activity of five Duchenne and two Becker patients (aged 4-12 years) was recorded during 2 weekend days, 10 hours each day, before and one month after the initiation of a treatment with steroids. Using both descriptive statistics and nonlinear time-series analysis methods several parameters were defined among which: the time spent sitting, standing, walking and lying, the number of continuous walking episodes superior to 2 minutes; the percent of 2 or 3 successive walking periods superior to 30 sec over the monitoring time. The data showed that after one month of steroid treatment the objective functional mobility parameters have a tendency to improve. For example, the time spent walking and the time spent in activity (walking & standing) increased respectively from 18.4?4 to 21.8?4.8% and from 55?11% to 62?10% after treatment. Similarly, the number of 2 minutes continuous walking episodes increases from 5?5 to 9?3 and the percent of 2 or 3 successive walking episodes >30 sec increased from 2?1.4% to 4?1.08%. The number of activity periods preceded and followed by shorter rest increased from 46?11% to 48?16%. Further results will be discussed in the symposium as well as the advantages and limitations of the ASUR system and other existing devices.
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