Open AccessAdult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy
Author(s) -
R. Quinlivan,
Ben Messer,
Patrick B. Murphy,
Rónan Astin,
Rahul Mukherjee,
James S. Khan,
Anton Emmanuel,
Sze Choong Wong,
R Kulshresha,
Tracey Willis,
J. Pattni,
Denise Willis,
Allison J. Morgan,
Konstantinos Savvatis,
Richard Keen,
John Bourke,
Chiara Marini Bettolo,
Channa Hewamadduma,
Ansn
Publication year - 2021
Publication title -
journal of neuromuscular diseases
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.366
H-Index - 23
eISSN - 2214-3602
pISSN - 2214-3599
DOI - 10.3233/jnd-200609
Subject(s) - duchenne muscular dystrophy , medicine , guideline , muscular dystrophy , palliative care , clinical practice , neurology , medline , family medicine , pediatrics , physical therapy , nursing , pathology , psychiatry , political science , law
There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology. Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.