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Adult Care & Duchenne

Consensus Guideline for Adult Duchenne Care

There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. Adult life with Duchenne comes with new opportunities as well as new medical issues, which have not been addressed in the current Standards of Care.

Through a series of workshops with specialists from a wide range of clinical areas, the Consensus Guideline for Adult Duchenne Care were published in the Journal of Neuromuscular Diseases. The document seeks to create a consensus based Standard of Care for adults affected by Duchenne MD.

The document aims to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.

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Professor Ros Quinlivan

We are grateful for professor Ros Quinlivan for taking the lead on this, and would like to thank the Adult North Star Network (ANSN) and Muscular Dystrophy UK for their contributions.

Ros Quinlivan obtained a BSc in Psychology before going on to study medicine at UCL. She was the first clinical Research fellow in Neuromuscular disease at Guy’s Hospital, working across paediatric and adult specialties. She was awarded an MD by the University of London for her research into the cardiomyopathy of Duchenne and Becker Muscular Dystrophy. 

She moved to UCLH in 2010, where she leads the transition service for adolescents and young adults with Neuromuscular Disease at GOSH and Queen Square and is clinical lead for the nationally commissioned service for McArdle disease and related disorders. She is joint co-ordinating editor for the Cochrane Neuromuscular Disease Group.

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Adult Life & Duchenne