In the week of World Duchenne Awareness Day 2021 we are delighted to be able to announce that the first ever Consensus Guideline for the Standard of Care of Adults with Duchenne Muscular Dystrophy has been published in the Journal of Neuromuscular Disorders.
The Standard of Care, a world first, has been developed by the Adult North Star Network, whose work Muscular Dystrophy UK (MDUK) has funded and co-ordinated. It provides guidance for health professionals to ensure adults with Duchenne muscular dystrophy get equitable best-practice care, and leads on from the child-focussed standards of care for children with Duchenne first published in 2010 and revised in 2018.
In 2016, MDUK funded a PhD project to help formalise the Adult North Star Network, a prospective natural history database. The purpose being to improve the quality of care and equity of access to specialist support for adults, by developing best practice care standards.
Prof Ros Quinlivan, who chairs the Adult North Star Network, presented the ground-breaking Standard of Care at an event to mark World Duchenne Awareness Day on 7 September.
Prof Quinlivan said:
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 muscular dystrophy, 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.
Catherine Woodhead, Chief Executive of Muscular Dystrophy UK said:
I am extremely pleased that Muscular Dystrophy UK has been able to fund and support the development of the first published best practice standards of care for adults living with Duchenne muscular dystrophy. We hope that the pioneering work of Professor Ros Quinlivan and the Adult NorthStar Network will help to improve the consistency of high quality care for adults with Duchenne in the UK, but also across the world as these recommendations are adopted in other countries.
If you’d like to see Prof Quinlivan presenting on this subject, please do join us at our Muscles Matters online seminar on Duchenne muscular dystrophy on Thursday 9 September from 1pm-3pm. If you’re not able to join the live seminar, you can always watch it back later, on our YouTube channel.