To determine whether there is a comparable/increased/decreased risk for COVID- 19 among ALS-patients.

Email/telephone survey of 7 NC ALS Multidisciplinary Clinics serving 910 ALS- patients identified one COVID-19 ALS. Riluzole has antiviral/cytokine modulation effects[Achour 2009]while coronavirus protease inhibitors use the benzothiazole backbone [basic structure of riluzole] as scaffolds. Furthermore, preclinical studies have identified edaravone is a potential treatment against interstitial lung fibrosis in inflammatory induced respiratory distress[Zhi 2011, Wang 2018].

IRB approved protocol to survey 133 NEALS Investigator Sites with opt-in internet (Survey Monkey)portal containing 6 questions: From 1 March 2020 through 31 May 2020, (1)How many COVID–19 positive ALS-patients have been identified at your center? How many patients were on (2)riluzole alone? (3)edaravone alone? (4)both riluzole and edaravone? (5)neither treatment? (6)Number of ALS-patients seen at center from 1 Jan 2020 – 31 Mar 2020?

Reporting NEALS sites [26/133] identified 19 COVID-19 infections among 2926 ALS patients. The median/mode case rate was 0 but the range among sites reporting COVID-19 ALS cases varied from 5-200 COVID-19 infections per 1000 ALS-patients with a mean 5.2 COVID-19 ALS cases per 1000 ALS-patients[95% confidence limits = 0.7 – 9.6 ]across all reporting sites. There was no difference in COVID-19 incidence as a function of riluzole or edaravone use: no riluzole|no edaravone – 7/19 [36.8 %]; riluzole alone – 8/19 [42.1 %]; riluzole|edaravone – 4/19 [21.1 %].

The observed COVID-19 ALS case rate in 2926 ALS patients was 5.2 COVID-19 ALS cases per 1000 ALS-patients[95% confidence limits = 0.7 – 9.6]comparable to COVID-19 case rate observed in European and USA cohorts of Parkinson’s Disease (PD)and Multiple Sclerosis(MS)patients. The case rate was apparently not affected by treatment with/without riluzole, edaravone, or riluzole/edaravone together. Anecdotal reports of less severe COVID-19 disease in ALS--patients on riluzole and edaravone require further investigation via a COVID-19 ALS Case registry.