Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive and fatal neurodegenerative disease characterized by progressive weakness involving limb, bulbar, and respiratory muscles.There is currently no information suggesting how COVID-19 affects patients diagnosed with amyotrophic lateral sclerosis (ALS). This is especially important as respiratory compromise is common in ALS patients and can complicate the clinical course as COVID-19 could lead to respiratory failure and need for intubation. We intend that this registry will guide our understanding of how COVID-19 affects patients with ALS.
The purpose of this registry is to assess the incidence and prevalence of COVID-19 in ALS
patients, the effect of COVID-19 on ALS disease trajectory, and the impact, if any, of
edaravone, riluzole and other concomitant medication used in ALS like Albuterol and
dextromethorphan/quinidine (Nuedexta) on these parameters. COVID-19 incidence and prevalence
in the ALS population will be assessed through outcomes reporting ranging from recovered
infections to patient death reported in a patient facing registry.
Inclusion Criteria:
- Diagnosis of ALS and
- A confirmed COVID-19 infection determined by:
1. positive SARS-CoV-2 viral RNA PCR test and/or
2. positive serology antibody testing for SARS-CoV-2
Exclusion Criteria:
- No ALS diagnosis
- No confirmed COVID-19 infection
Neurosciences Institute, Neurology - Charlotte
Charlotte, North Carolina, United States
Urvi Desai, MD, Principal Investigator
Neurologist/ MDA Director