The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID-19 pandemic
- PMID: 32329920
- PMCID: PMC7264600
- DOI: 10.1002/mus.26902
The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID-19 pandemic
Abstract
The coronavirus disease 2019 (COVID-19) pandemic has resulted in the reorganization of health-care settings affecting clinical care delivery to patients with Duchenne and Becker muscular dystrophy (DBMD) as well as other inherited muscular dystrophies. The magnitude of the impact of this public health emergency on the care of patients with DBMD is unclear as they are suspected of having an increased risk for severe manifestations of COVID-19. In this article, the authors discuss their consensus recommendations pertaining to care of these patients during the pandemic. We address issues surrounding corticosteroid and exon-skipping treatments, cardiac medications, hydroxychloroquine use, emergency/respiratory care, rehabilitation management, and the conduct of clinical trials. We highlight the importance of collaborative treatment decisions between the patient, family, and health-care provider, considering any geographic or institution-specific policies and precautions for COVID-19. We advocate for continuing multidisciplinary care for these patients using telehealth.
Keywords: BMD; COVID-19; DMD; consensus; muscular dystrophy; recommendations.
© 2020 Wiley Periodicals, Inc.
Conflict of interest statement
A.V. has received support for serving on the advisory boards for Biogen, PTC Therapeutics, and AveXis; is an associate editor for neuromuscular disorders at Medlink Neurology; and serves as principal investigator and subinvestigator at Arkansas Children's Hospital for studies in DMD and spinal muscular atrophy. K.R.W. is a consultant for Sarepta, PTC, Santhera, and Dynacure; served on the data monitoring safety board for Fibrogen; and received research support from the National Institutes of Health, Sarepta, Roche, Pfizer, PTC, and Catabasis. S.A. is a consultant for Sarepta and Biogen, and has received research support from Sarepta, Roche, PTC, Biogen, and Scholar Rock. C.M.M. has received research support from and/or has served as either a paid consultant or as a paid member of scientific advisory boards for Sarepta Therapeutics, PTC Therapeutics, Santhera Pharmaceuticals, Astellas, Bristol‐Myers Squibb, Catabasis, Capricor, Eli Lilly, Epirium Bio, FibroGen, Italfarmaco, Marathon Pharmaceuticals Pfizer, Prosensa, and Roche. K.D.M. serves as site principal investigator for the AveXis RESTORE registry for spinal muscular atrophy; received research funding from National Institutes of Health, the US Centers for Disease Control and Prevention, the Friedreich's Ataxia Research Alliance, and the Muscular Dystrophy Association; and was site principal investigator for studies involving Sarepta, Retrotope, Reata, PTC, Italfarmaco, Santhera, Catabasis, CSL Behring, and BMS. J.A.P. received compensation/research support from Biogen, AveXis, Genentech, Scholar Rock, Sarepta, and PTC. B.L.W. has received compensation/research support from Biomarin. K.E. serves as consultant to Ionis, Fulcrum, Acceleron, and Biogen, and participates on an advisory committee adult spinal muscular atrophy for Biogen. P.B.S. has served on ad hoc advisory boards for Genentech, Biogen, AveXis, PTC, and Sarepta; serves as a speaker for Alexion, Grifols, and Biogen; and has research funding from National Instutes of Health/National Institute of Neurological Disorders and Stroke, Biogen, AveXis, Audentes, Pfizer, PTC, Sarepta, Santhera, Roche, and Sanofi/Genzyme. R.J.B. is on the scientific advisory boards of Biogen and Sarepta, and has received research/grant support as principal investigator of studies from Acceleron, AveXis, Biogen, Capricor Catabasis, the National Institutes of Health/National Institute of Neurological Disorders and Stroke, Pfizer, PTC, and Sarepta. V.K.R. has received support for consultation with Avexis, Biogen, Sarepta, and PTC Therapeutics. E.C.S. has received research support and consulting fees from AveXis and Biogen. C.M.P. serves on the advisory boards and as consultant for Biogen, Sarepta, and AveXis; serves as a speaker for Biogen and AveXis; and has research support from AveXis, Astellas, Biogen, Catabasis, CSL Behring, PTC, Pfizer, Sarepta, and Scholar Rock. A.M.C. serves on advisory boards for Sarepta, AveXis, Roche, and Acceleron; serves on a data monitoring safety board for Catabasis; and has worked as a subinvestigator at Nationwide Children's Hospital for studies in DMD for Sarepta and in spinal muscular atrophy for AveXis. E.C. has received personal compensation for serving on advisory boards and/or as a consultant for AveXis, Biogen, Medscape, Pfizer, PTC Therapeutics, Sarepta, Ra Pharma, Wave, the Patient‐Centered Outcomes Research Institute, and Strong Bridge Biopharma; has received personal compensation for serving on a speaker's bureau for Biogen and research and/or grant support from the US Centers for Disease Control and Prevention, Cure SMA, Muscular Dystrophy Association, National Institutes of Health, Parent Project Muscular Dystrophy, PTC, Santhera, Sarepta, Orphazyme, and the US Food and Drug Administration; and received royalties from Oxford University Press and compensation from Medlink for editorial duties.
