The national muscular dystrophy wards database of Japan lists 118 long-term Duchenne muscular dystrophy (DMD) patients who were at least 40 years old as of October 1, 2013. To elucidate the clinical features of DMD patients aged 40 years and older, gene analysis and muscle biopsy findings, as well as medical condition information were obtained. Of the registered patients who consented to participate, 55 met genetic or biochemical criteria confirming DMD were analysed. These patients had survived into their 40s by receiving multidisciplinary intervention.
The findings form this study emphasise the need of future studies to investigate disease modifiers and the mechanism of long-term survival. In addition, establishment of a worldwide care standard with focus on quality of life for adult males with DMD is important.
