Design of the Protocol

Authors:
  • RARichard T. Abresch
    Richard T. Abresch
  • SASusan Aitkens
    Susan Aitkens
  • GCGregory T. Carter
    Gregory T. Carter
  • EJE Ralph Johnson
    E Ralph Johnson
  • DKDavid D. Kilmer
    David D. Kilmer
  • MMMegan A. McCrory
    Megan A. McCrory
  • NWNancy C. Wright
    Nancy C. Wright
Publisher website
Google Scholar
Abstract
The purpose of this 10-yr investigation was to develop comprehensive impairment and disability profiles of the clinical characteristics of seven neuromuscular diseases: spinal muscular atrophy, hereditary motor sensory neuropathy, Duchenne muscular dystrophy, Becker's muscular dystrophy, facioscapulohumeral muscular dystrophy, limb-girdle syndrome, and myotonic dystrophy. Based on the World Health Organization's classification of disablement, as applied to neuromuscular diseases, impairment was evaluated by measurements of strength, range of motion, spine deformity, cardiac and pulmonary function, and intellectual capacity. Disability was evaluated by measures of mobility and upper extremity function, cardiopulmonary adaptations, cardiac and pulmonary complications, and psychosocial adjustment.