Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy.
Duchenne Muscular Dystrophy
multi-disciplinary care
non-invasive ventilation
Journal
Journal of neuromuscular diseases
ISSN: 2214-3602
Titre abrégé: J Neuromuscul Dis
Pays: Netherlands
ID NLM: 101649948
Informations de publication
Date de publication:
2021
2021
Historique:
pubmed:
14
9
2021
medline:
4
2
2022
entrez:
13
9
2021
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 34511509
pii: JND200609
doi: 10.3233/JND-200609
pmc: PMC8673515
doi:
Types de publication
Guideline
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
899-926Subventions
Organisme : British Heart Foundation
ID : SP/05/001/18616
Pays : United Kingdom
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