Amyotrophic lateral sclerosis care and research in the United States during the COVID‐19 pandemic: Challenges and opportunities

Andrews, Jinsy A.; Berry, James D.; Baloh, Robert H.; Carberry, Nathan; Cudkowicz, Merit E.; Dedi, Brixhilda; Glass, Jonathan; Maragakis, Nicholas J.; Miller, Timothy M.; Paganoni, Sabrina; Rothstein, Jeffrey D.; Shefner, Jeremy M.; Simmons, Zachary; Weiss, Michael D.; Bedlack, Richard S.

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.