We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of specialist disciplines and were published in three parts, in separate articles, which are free to access (see links below).

Action Duchenne originally co-funded the translation of the original standard of care guidelines, into the widely used family guide and continues to be at the forefront of these developments.

The new care considerations aim to address the needs of young people living with Duchenne, to provide guidance on advances in clinical assessments, in light of emerging treatments. The committee identified 11 topics, eight of which were addressed in the original care considerations. The three new topics are primary care and emergency management, endocrine management (covering growth and development and potential hormone deficiencies) and quality of life and care for the lifetime of young people living with Duchenne.

In part 1 of the three-part update, the focus was on the diagnosis of Duchenne and neuromuscular, rehabilitation, endocrine (growth, puberty, and hormonal deficiencies like adrenal insufficiency) and gastrointestinal (including nutrition and difficulty in swallowing) management.

In part 2, the recommendations included respiratory, cardiac, bone health and osteoporosis and orthopaedic and surgical management.

The last article highlighted primary care, emergency management and psychosocial issues. This part includes assessments and interventions to improve independence, and quality of life in critical domains of living, including health care, education, employment and interpersonal relationships.

We are pleased that these updated recommendations have been accredited by The National Institute for Health and Care Excellence (NICE). This means that these care updates should now be implemented by the NHS.

Multidisciplinary care has evolved since the publication of the original Standard of Care guidelines in 2010. Action Duchenne originally co-funded the translation of the original standard of care guidelines, into the widely used family guide and continues to be at the forefront of these developments. At our recent international conference, Dr Michela Guglieri , Newcastle, presented the updated standards of care guidelines in two parts, which you can view below;

We are pleased with these updated recommendations and shall continue to ensure these are widely adopted across the UK and internationally. We will be working with key international stakeholders and fellow Duchenne organisations on the updated family guide, which will be released later this year.

Lancet Neurology articles:

We always look forward to hearing from you and are delighted to answer any questions or support you any way we can, please feel free to contact Angela Stringer, DMD Registry Curator and Advocate: [email protected] or Neil Bennett, Director of Research [email protected].