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(University of Central Florida), Eugenio Mercuri(Centro Clinico Nemo), Oscar H. Meyer(Children's Hospital of Philadelphia), Anita K. Simonds(Royal Brompton & Harefield NHS Foundation Trust), Mary Schroth(University of Wisconsin American Family Children's Hospital), Robert J. Graham(Boston Children's Hospital), Janbernd Kirschner(University of Freiburg), Susan T. Iannaccone(Children's Medical Center), Thomas O. Crawford(Johns Hopkins University), Simon Woods(Newcastle University), Francesco Muntoni(Great Ormond Street Hospital), Brunhilde Wirth(University of Cologne), Jacqueline Montes(Columbia University Irving Medical Center), Marion Main(Great Ormond Street Hospital), Elena Mazzone(Centro Clinico Nemo), Michael G. Vitale(Columbia University Irving Medical Center), Brian D. Snyder(Boston Children's Hospital), Susana Quijano‐Roy(Inserm), Enrico Bertini(Bambino Gesù Children's Hospital), Rebecca Hurst Davis(Intermountain Healthcare), Ying Qian, Thomas Sejersen(Karolinska Institutet)
Cited by 659Open Access
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.
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