Adult North Star Network (ANSN): consensus guideline for the standard Of care of adults with Duchenne muscular dystrophy.
Quinlivan, R Messer, B Murphy, P Astin, R Mukherjee, R Khan, J Emmanuel, A Wong, S C Kulshresha, R Willis, T
Quinlivan, R
Messer, B
Murphy, P
Astin, R
Mukherjee, R
Khan, J
Emmanuel, A
Wong, S C
Kulshresha, R
Willis, T
Abstract
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.
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Date
2021
Type
Article
Other
Other
Subject
Neurology, Orthopaedics
Collections
Citation
Quinlivan R, Messer B, Murphy P, Astin R, Mukherjee R, Khan J, Emmanuel A, Wong SC, Kulshresha R, Willis T, Pattni J, Willis D, Morgan A, Savvatis K, Keen R, Bourke J, Marini Bettolo C, Hewamadduma C; ANSN. Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy. J Neuromuscul Dis. 2021;8(6):899-926. doi: 10.3233/JND-200609
Journal / Source Title
Journal of Neuromuscular Diseases
DOI
10.3233/JND-200609
PMID
34511509
Publisher
SAGE Publications
Publisher’s URL
https://journals.sagepub.com/home/JND