Quinlivan, R., Messer, B., Murphy, P. et al. (15 more authors) (2021) Adult North Star Network (ANSN): consensus guideline for the standard of care of adults with Duchenne muscular dystrophy. Journal of Neuromuscular Diseases, 8 (6). pp. 899-926. ISSN 2214-3599
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2021– The authors. Published by IOS Press. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (CC BY-NC 4.0) https://creativecommons.org/licenses/by-nc/4.0/ |
Keywords: | Duchenne Muscular Dystrophy; multi-disciplinary care; non-invasive ventilation; Adult; Consensus; Humans; Muscular Dystrophy, Duchenne; Standard of Care; Surveys and Questionnaires |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Sheffield Teaching Hospitals |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 30 Sep 2024 15:31 |
Last Modified: | 30 Sep 2024 15:31 |
Status: | Published |
Publisher: | IOS Press |
Refereed: | Yes |
Identification Number: | 10.3233/jnd-200609 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:217760 |