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| ID | Type | Description | Link |
|---|---|---|---|
| AH-NSI-COVID19-ALS | Other Identifier | Atrium |
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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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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. | Data will be collected through study completion, an average of 3 years |
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Inclusion Criteria:
Diagnosis of ALS and
A confirmed COVID-19 infection determined by:
Exclusion Criteria:
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Our study population consists of qualifying cases of patients with ALS who have had a laboratory confirmed COVID-19 infection.
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| Name | Affiliation | Role |
|---|---|---|
| Urvi Desai, MD | Neurologist/ MDA Director | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Neurosciences Institute, Neurology - Charlotte | Charlotte | North Carolina | 28207 | United States |
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| ID | Term |
|---|---|
| D000086382 | COVID-19 |
| D000690 | Amyotrophic Lateral Sclerosis |
| ID | Term |
|---|---|
| D011024 | Pneumonia, Viral |
| D011014 | Pneumonia |
| D012141 | Respiratory Tract Infections |
| D007239 | Infections |
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| D014777 |
| Virus Diseases |
| D018352 | Coronavirus Infections |
| D003333 | Coronaviridae Infections |
| D030341 | Nidovirales Infections |
| D012327 | RNA Virus Infections |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D013118 | Spinal Cord Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D016472 | Motor Neuron Disease |
| D019636 | Neurodegenerative Diseases |
| D057177 | TDP-43 Proteinopathies |
| D009468 | Neuromuscular Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |