physical training in boys with duchenne muscular dystrophy the protocol of the no use is disuse study体能训练杜氏肌萎缩症的男孩中没有使用废弃的协议的研究.pdf

Jansen et al. BMC Pediatrics 2010, 10:55 /1471-2431/10/55 STUDY PROTOCOL Open Access Physical training in boys with Duchenne Muscular Dystrophy: the protocol of the No Use is Disuse study 1* 1 2 1 Merel Jansen , Imelda JM de Groot , Nens van Alfen , Alexander CH Geurts Abstract Background: “Use it or lose it” is a well known saying which is applicable to boys with Duchenne Muscular Dystrophy (DMD). Besides the direct effects of the muscular dystrophy, the increasing effort to perform activities, the fear of falling and the use of personal aids indirectly impair leg and arm functions as a result of disuse. Physical training could oppose this secondary physical deterioration. The No Use is Disuse (NUD) study is the first study in human subjects with DMD that will examine whether a low-intensity physical training is beneficial in terms of preservation of muscle endurance and functional abilities. The study consists of two training intervention studies: study 1 “Dynamic leg and arm training for ambulant and recently wheelchair-dependent boys with DMD and, study 2 “Functional training with arm support for boys with DMD who have been confined to a wheelchair for several years”. This paper describes the hypotheses and methods of the NUD study. Methods: Study 1 is an explorative randomized controlled trial with multiple baseline measurements. Thirty boys with a DNA-established diagnosis of DMD will be included. The intervention consists of a six-months physical training during which boys train their legs and arms with active and/or assisted cycling training equipment. The primary study outcomes are muscle endurance and functional abilities, assessed with a Six-Minute Bicycle Test and the Motor Function Measure. Study 2 has a wit