COVID-19 Amyotrophic Lateral Sclerosis (ALS) Registry

Study Purpose:

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.

Study Status:

Not recruiting


Covid19 , Amyotrophic Lateral Sclerosis

Study Type:

Observational [Patient Registry]

Type of Intervention:


Intervention Name:






Study Chair(s)/Principal Investigator(s):

Urvi Desai, MD, Neurologist/ MDA Director ID:


Neals Affiliated?


Coordinating Center Contact Information

Neurosciences Institute

Charlotte, North Carolina, 28207

Full Study Summary:

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.

Study Sponsor:

Wake Forest University Health Sciences

Estimated Enrollment:


Estimated Study Start Date:

10 / 15 / 2020

Estimated Study Completion Date:

01 / 31 / 2023

Posting Last Modified Date:

03 / 24 / 2023

Date Study Added to

09 / 22 / 2020

Minimum Age:

18 Years

Maximum Age:


Can participants use Riluzole?


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 28207
United States