The National Amyotrophic Lateral Sclerosis Registry

Recruiting

• Conditions: Amyotrophic Lateral Sclerosis

• Registration Number: NCT01772602
• Lead Sponsor: Centers for Disease Control and Prevention

Brief Summary

The purpose of this registry is to (A) better describe the incidence and prevalence of Amyotrophic Lateral Sclerosis (ALS) in the United States;(B) examine appropriate factors, such as environmental and occupational, that may be associated with the disease; (C) better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease; and (D) better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.

Detailed Description

The National ALS Registry's Research Notification System allows person with ALS to participate in clinical trials.

Study Timeline

• Study Start: 2010-10
• Study First Submitted: 2013-01-17
• Study First Submitted QC: 2013-01-18
• Study First Posted: 2013-01-21
• Status Verified: 2025-04
• Last Update Submitted: 2025-04-07
• Last Update Posted: 2025-04-09
• Primary Completion: 2040-12
• Study Completion: 2040-12

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 30000

Inclusion Criteria

• U.S. citizens 18 years of age or older

Exclusion Criteria

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
The National Amyotrophic Lateral Sclerosis (ALS) Registry	1 year	To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.

Secondary Outcome Measures

Name	Time	Method
Risk factors of ALS	1 year	To learn more about the potential risk factors for ALS

Trial Locations

Locations (1)

CDC; 🇺🇸 Atlanta, Georgia, United States