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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.

  • Richard S. Finkel
  • , Eugenio Maria Mercuri
  • , Oscar H. Meyer
  • , Anita K. Simonds
  • , Mary K. Schroth
  • , Robert J. Graham
  • , Janbernd Kirschner
  • , Susan T. Iannaccone
  • , Thomas O. Crawford
  • , Simon Woods
  • , Francesco Muntoni
  • , Brunhilde Wirth
  • , Jacqueline Montes
  • , Marion Main
  • , Elena Stacy Mazzone
  • , Michael Vitale
  • , Brian Snyder
  • , Susana Quijano-Roy
  • , Enrico Bertini
  • , Enrico Silvio Bertini
  • Rebecca Hurst Davis, Ying Qian, Thomas Sejersen
  • UCF College of Medicine
  • The Children's Hospital of Philadelphia
  • Royal Brompton and Harefield Trust
  • University of Wisconsin-Madison
  • Boston Children's Hospital
  • University of Freiburg
  • University of Texas Southwestern Medical Center
  • Johns Hopkins University
  • Newcastle University
  • University College London
  • University of Cologne
  • Columbia University
  • FILNEMUS
  • IRCCS Ospedale pediatrico Bambino Gesù - Roma
  • University of Utah
  • SMA Foundation
  • Karolinska Institutet

Research output: Contribution to journalArticle

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.
Original languageEnglish
Pages (from-to)197-207
Number of pages11
JournalNeuromuscular Disorders
DOIs
Publication statusPublished - 2018

Keywords

  • spinal muscular atrophy

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