@article{698e66e849924de18f4bf70ebcfffcff,
title = "Amyotrophic lateral sclerosis care and research in the United States during the COVID-19 pandemic: Challenges and opportunities",
abstract = "Coronavirus disease 2019 has created unprecedented challenges for amyotrophic lateral sclerosis (ALS) clinical care and research in the United States. Traditional evaluations for making an ALS diagnosis, measuring progression, and planning interventions rely on in-person visits that may now be unsafe or impossible. Evidence- and experience-based treatment options, such as multidisciplinary team care, feeding tubes, wheelchairs, home health, and hospice, have become more difficult to obtain and in some places are unavailable. In addition, the pandemic has impacted ALS clinical trials by impairing the ability to obtain measurements for trial eligibility, to monitor safety and efficacy outcomes, and to dispense study drug, as these also often rely on in-person visits. We review opportunities for overcoming some of these challenges through telemedicine and novel measurements. These can reoptimize ALS care and research in the current setting and during future events that may limit travel and face-to-face interactions.",
author = "Andrews, {Jinsy A.} and Berry, {James D.} and Baloh, {Robert H.} and Nathan Carberry and Cudkowicz, {Merit E.} and Brixhilda Dedi and Jonathan Glass and Maragakis, {Nicholas J.} and Miller, {Timothy M.} and Sabrina Paganoni and Rothstein, {Jeffrey D.} and Shefner, {Jeremy M.} and Zachary Simmons and Weiss, {Michael D.} and Bedlack, {Richard S.}",
note = "Funding Information: J.A. has consulted for Avexis, AL‐S Pharma, Biogen, and Cytokinetics, and has received research grants from Neuraltus, Roche, Biogen, and Novartis. J.B. has consulted for Biogen, Clene Nanomedicine, and Alexion, and has received research support from Alexion, Biogen, MT Pharma of America, Amylyx Therapeutics, Anelixis Therapeutics, Brainstorm Cell Therapeutics, Genentech, nQ Medical, the National Instutes for Health/National Institute of Neurological Disorder and Stroke (NINDS/NIH), the Muscular Dystrophy Association (MDA), and ALS One. R.B. has consulted for Modulus Pharmaceuticals, Mitochondria in Motion, Acurastem, Sarepta, and Kite Pharma, and has received research grants from the NINDS/NIH, California Institute for Regenerative Medicine, Target ALS, Burroughs Wellcome Fund, the MDA, and the Charcot–Marie‐Tooth Association. M.C. has consulted for Biogen, Cytokinetics, Sunovian, AL‐S Pharma, Avexis, and Takeda. J.G. has research support from the NIH, ALSA, and the MDA, and clinical trial funding from Biogen, Genentech, Amylyx, Cytokinetics, and the Healy Center at Massacusetts General Hospital. N.M. has consulted for Orion, Apellis, Brainstorm Cell Therapeutics, and Clene Nanomedicine, and has received research support from the Department of Defense ALSRP, Answer ALS, the ALS Association, the NIH/NINDS, Biogen, and Clene. T.M.M. has licensing agreements with C2N and Ionis Pharmaceuticals, has served on advisory boards for and receives material support from Biogen and Ionis Pharmaceuticals, and is a consultant for Cytokinetics and Disarm Therapeutics. S.P. reports personal consulting fees for advisory panels from Orion Corp and reports research grant suppport from Amylyx Therapeutics, Revalesio Corporation, Ra Pharma, Biohaven, Clene, Prilenia, the ALS Association, the American Academy of Neurology, ALS Finding a Cure, the Salah Foundation, and the Spastic Paraplegia Foundation. J.R. has consulted for Expansion therapeutics and received research grants from the NIH/NINDS, the NIH/National Institute on Aging, the Department of Defense, the Chan Zuckerberg Initiative, the ALS Association, the MDA, Target ALS, F Prime, Travelers Insurance, American Airlines, ALS Finding a Cure, Answer ALS, Team Gleason, and Microsoft. Z.S. has consulted for Amylyx, Biogen, Biohaven, and Cytokinetics, and has received research support from Biogen, Biohaven, and Cytokinetics. M.W. has consulted for Biogen, Ra Pharma, and Argenx; is a speaker for Nufactor; and has received research support from ALSA and ALS Finding a Cure. R.B. has research support from ALSA and Orion, and consulting support from Amylyx, Alexion, ALSA, Biogen, Brainstorm Cell, ITF Pharma, Mallinkrodt, New Biotic, and Woolsey Pharma. N.C., B.D., and J.S. declare no potential conflicts of interest. Publisher Copyright: {\textcopyright} 2020 Wiley Periodicals, Inc.",
year = "2020",
month = aug,
day = "1",
doi = "10.1002/mus.26989",
language = "English (US)",
volume = "62",
pages = "182--186",
journal = "Muscle and Nerve",
issn = "0148-639X",
publisher = "John Wiley and Sons Inc.",
number = "2",
}