Today on World Duchenne Awareness Day, the Journal of Neuromuscular Diseases published the consensus guideline for adult Duchenne care. The publication can be accessed by clicking on the link below. We are grateful for professor Ros Quinlivan for taking the lead on this, and would like to thank the Adult North Star Network (ANSN) and Muscular Dystrophy UK for their contributions.
There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology.
Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.