COVID-19 Amyotrophic Lateral Sclerosis (ALS) Registry

Wake Forest University Health Sciences47 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Covid19 Amyotrophic Lateral Sclerosis

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

COVID-19 incidence and prevalence in the ALS population

Assessed through outcomes reporting ranging from recovered infections to patient death reported in a patient facing registry.

Time frame: Data will be collected through study completion, an average of 3 years