Finkel, Richard S., Mercuri, Eugenio ORCID: 0000-0002-9851-5365, Meyer, Oscar H., Simonds, Anita K., Schroth, Mary K., Graham, Robert J., Kirschner, Janbernd ORCID: 0000-0003-1618-7386, Iannaccone, Susan T., Crawford, Thomas O., Woods, Simon ORCID: 0000-0002-8998-5234, Muntoni, Francesco, Wirth, Brunhilde ORCID: 0000-0003-4051-5191, Montes, Jacqueline, Main, Marion, Mazzone, Elena S., Vitale, Michael, Snyder, Brian, Quijano-Roy, Susana, Bertini, Enrico ORCID: 0000-0001-9276-4590, Davis, Rebecca Hurst, Qian, Ying and Sejersen, Thomas (2018). Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromusc. Disord., 28 (3). S. 197 - 208. OXFORD: PERGAMON-ELSEVIER SCIENCE LTD. ISSN 1873-2364

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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. (C) 2017 Published by Elsevier B.V.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Finkel, Richard S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mercuri, EugenioUNSPECIFIEDorcid.org/0000-0002-9851-5365UNSPECIFIED
Meyer, Oscar H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Simonds, Anita K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schroth, Mary K.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Graham, Robert J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kirschner, JanberndUNSPECIFIEDorcid.org/0000-0003-1618-7386UNSPECIFIED
Iannaccone, Susan T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Crawford, Thomas O.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Woods, SimonUNSPECIFIEDorcid.org/0000-0002-8998-5234UNSPECIFIED
Muntoni, FrancescoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wirth, BrunhildeUNSPECIFIEDorcid.org/0000-0003-4051-5191UNSPECIFIED
Montes, JacquelineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Main, MarionUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mazzone, Elena S.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vitale, MichaelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Snyder, BrianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Quijano-Roy, SusanaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bertini, EnricoUNSPECIFIEDorcid.org/0000-0001-9276-4590UNSPECIFIED
Davis, Rebecca HurstUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Qian, YingUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sejersen, ThomasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-193605
DOI: 10.1016/j.nmd.2017.11.004
Journal or Publication Title: Neuromusc. Disord.
Volume: 28
Number: 3
Page Range: S. 197 - 208
Date: 2018
Publisher: PERGAMON-ELSEVIER SCIENCE LTD
Place of Publication: OXFORD
ISSN: 1873-2364
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
KUGELBERG-WELANDER-DISEASE; FATTY-ACID-METABOLISM; LONG-TERM SURVIVAL; NONINVASIVE VENTILATION; CONSENSUS STATEMENT; CARDIAC INVOLVEMENT; DOUBLE-BLIND; TYPES I; CHILDREN; TYPE-1Multiple languages
Clinical Neurology; NeurosciencesMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/19360

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