I am pleased to announce that the Journal for Neuromuscular Disorders has accepted for publication the first ever guidance on the standard of care for adults living with Duchenne muscular dystrophy.
Throughout my career, as a consultant in the NHS, I have been passionate in supporting children and adults living with a neuromuscular condition. During this time, it has been clear to me, and my colleagues across the UK, that people with Duchenne muscular dystrophy may experience more fragmented care when they transition to adult services. Which is why, in 2015, I worked with Muscular Dystrophy UK to set up a network of specialist health professionals who provide care for adults with Duchenne called the ‘Adult North Star Network’.
In 2016, MDUK funded a PhD project to help formalise the Adult North Star Network, create a prospective natural history database and improve the quality of care for adults by developing best practice care standards and using these to improve equity of access to specialist support. The prospective natural history database may provide further insights into clinical trial design and effectiveness of treatments through cohort study.
I hope that our new standard of care guidance document will be useful as a benchmark for improving the quality of care for adults living with Duchenne across the UK. In addition, I hope it will encourage further research to improve the management of specific health issues that affect adults with Duchenne muscular dystrophy
Finally, I’m delighted to share the news that I will be discussing our guidance on the standards of care at an on-line event for ‘Duchenne World Awareness Day’ on 7 September 2021.