International care recommendations were first published in 2010, after extensive review by 84 international experts in DMD diagnosis and care. It is important for individuals with Duchenne muscular dystrophy to receive the best quality care, which has shown to improve quality of life and life expectancy.
In 2018, significant updates to these guidelines were published, as well as expanding new areas of interest. These can be read on the links below:
Part 2: Respiratory, cardiac, bone health, and orthopaedic management
PPMD, UPPMD and TREAT-NMD have created a single-page summary of best-practice care in Duchenne muscular dystrophy (DMD). Based on the existing Care Considerations, it will broaden awareness of the “imperatives” in good DMD care, especially amongst non-specialists who are not familiar with the disease and will not have read the full Lancet publication or the condensed care guidelines developed for families.
This is available to download in 23 languages on this link.
The clinical recommendations are evidence-based and consensus-based guidelines for Duchenne muscular dystrophy (DMD) patient care in the UK, agreed by each DMD Care UK working group.
All recommendations have been based on the International DMD Care Considerations 2018, but are more specific and relevant for the UK healthcare system.
These recommendations were drafted by the Bone and Endocrine working group of the DMD Care UK project. They have been agreed through consultation and input from North Star specialists from across the UK network, members of the British Paediatric and Adolescent Bone Group and have been endorsed by the British Society for Paediatric Endocrinology and Diabetes (BSPED).
1. Available to download from the DMD Care website here.
2. Meeting report from the 3rd International Symposium: Muscle-Bone Interactions in DMD published in the journal for Neuromuscular Diseases. Moving Beyond the 2018 Minimum International Care Considerations for Osteoporosis Management in Duchenne Muscular Dystrophy (DMD)
These recommendations were drafted by the cardiology working group of the DMD Care UK project. They have been agreed through consultation and input from North Star specialists from across the UK network and DMD patient and caregiver representatives, and have been endorsed by the British Cardiovascular Society.
The recommendations were published in the BMJ Open Heart in October 2022.
These recommendations were drafted by the respiratory working group of the DMD Care UK project. They have been agreed through consultation and input from North Star specialists from across the UK network and DMD patient and caregiver representatives, and have been endorsed by the British Thoracic Society.
The recommendations were published in the journal Thorax in December 2023.