Manual testing (especially of the shoulder girdle muscles), gross motor function measurement (GMFM scale), thumb-index clamp, vital capacity, DEXA lean body mass and the physical component of the SF-36 are proving to be useful follow-up parameters for the long-term evaluation of the evolution of GNE myopathy, including in non-ambulatory patients. This was shown in a Japanese study of 33 people with GNE, 66% of whom were followed up over 5 years.
