Last week, the European Neuromuscular Centre (ENMC) published a summary of their workshop focused on bone development in Duchenne muscular dystrophy. The summary mentions the importance of educating clinicians and patients about bone health in Duchenne which can help to improve clinical care provided to patients.
The workshop also highlighted areas of development for research into bone health in Duchenne and highlighted opportunities to use current data to answer questions that already exist. Recent standards of care for Duchenne muscular dystrophy recommend looking for the earliest sign of fractures and treating them immediately, however there is currently no data for this in order to guide preventative therapy. The ENMC workshop calls for randomized trials looking at bone protective therapies to prevent first fractures in Duchenne muscular dystrophy. You can read more about the summary on the ENMC’s website.
Dr. Jarod Wong, who took part in the ENMC workshop, is a Consultant Paediatric Endocrinologist in Glasgow and has major clinical and research interest on bone health, growth and puberty in people with chronic conditions, especially those with neuromuscular conditions like Duchenne muscular dystrophy. Dr. Wong’s research into bone health in Duchenne is co-funded by Muscular Dystrophy UK, Action Duchenne and the Chief Scientist Office in Scotland.
Dr Wong will be holding a Q&A on the Muscular Dystrophy UK Facebook page on 21 June from 6pm – 7:30pm. The Q&A will cover bone health in all neuromuscular conditions, and research and care experts from Muscular Dystrophy UK will also be available to answer your questions. Please leave your questions in the event discussion if you are unable to make the time above.