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Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics

Authors :
Thomas Sejersen
Brian D. Snyder
Janbernd Kirschner
Francesco Muntoni
Eugenio Mercuri
Jacqueline Montes
Anita K. Simonds
Oscar H. Meyer
Michael G. Vitale
Enrico Bertini
Simon Woods
Ying Qian
Marion Main
Thomas O. Crawford
Rebecca Hurst Davis
Susana Quijano-Roy
Elena S. Mazzone
Susan T. Iannaccone
Robert J. Graham
Richard S. Finkel
Brunhilde Wirth
Mary K. Schroth
Source :
Neuromuscular disorders : NMD. 28(3)
Publication Year :
2017

Abstract

This is the second half of a two-part document updating the standard of care recommendations for spinal muscular atrophy published in 2007. This part includes updated recommendations on pulmonary management and acute care issues, and topics that have emerged in the last few years such as other organ involvement in the severe forms of spinal muscular atrophy and the role of medications. Ethical issues and the choice of palliative versus supportive care are also addressed. These recommendations are becoming increasingly relevant given recent clinical trials and the prospect that commercially available therapies will likely change the survival and natural history of this disease.

Details

ISSN :
18732364
Volume :
28
Issue :
3
Database :
OpenAIRE
Journal :
Neuromuscular disorders : NMD
Accession number :
edsair.doi.dedup.....8acd9ca8ed47ca6a8a0905d568c527b6