Résumé :
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The North Star Clinical Network for Paediatric Neuromuscular Disease Management (NSCN) is a collaboration of neuromuscular centres in the UK whose aim is to optimize the management of children with neuromuscular disorders. One of the initial key objectives was to standardise clinical assessment protocols and develop a tool for the assessment of ambulant children with DMD. The North Star Ambulatory Assessment (NSAA) was developed from the Hammersmith Scale of Motor Ability. The NSAA is a global assessment of ambulatory ability incorporating several activities and takes approximately 10 minutes to complete. Traditionally timed tests have been used to monitor clinical progress. These tests are included as part of the scale which saves time and avoids repetition which may induce fatigue or lack of co-operation. Studies to determine the agreement between physiotherapists showed good strength of agreement based on total subject scores (0.95 and 0.93 for consistency and absolute agreement respectively). In clinical studies the NSAA was able to respond to both deterioration and improvement and has been shown to be responsive to change induced by the introduction of steroid therapy. The NSAA is a reliable, robust, practical test that can be completed quickly. It incorporates the important disease milestones such as rising from the floor and walking ability as well as incorporating new skills that are seen in steroid treated children. It is responsive to change and can be realistically used across a range of settings with minimal, universally available equipment. It is currently being used in 20 sites across the UK and to date data on 200 children have been added to a specifically designed database.
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