NCT01772602

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.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
30,000

participants targeted

Target at P75+ for all trials

Timeline
176mo left

Started Oct 2010

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress52%
Oct 2010Dec 2040

Study Start

First participant enrolled

October 1, 2010

Completed
2.3 years until next milestone

First Submitted

Initial submission to the registry

January 17, 2013

Completed
4 days until next milestone

First Posted

Study publicly available on registry

January 21, 2013

Completed
27.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 1, 2040

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

December 1, 2040

Last Updated

April 29, 2026

Status Verified

April 1, 2026

Enrollment Period

30.2 years

First QC Date

January 17, 2013

Last Update Submit

April 24, 2026

Conditions

Amyotrophic Lateral Sclerosis

Keywords

Amyotrophic Lateral SclerosisLou Gehrig's DiseaseMotor Neuron Disease

Outcome Measures

Primary Outcomes (1)

  • The National Amyotrophic Lateral Sclerosis (ALS) Registry

    To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.

    1 year

Secondary Outcomes (1)

  • Risk factors of ALS

    1 year

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

ALS cases in the United States

You may qualify if:

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

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

CDC

Atlanta, Georgia, 30333, United States

RECRUITING

Related Links

MeSH Terms

Conditions

Amyotrophic Lateral SclerosisMotor Neuron Disease

Condition Hierarchy (Ancestors)

Spinal Cord DiseasesCentral Nervous System DiseasesNervous System DiseasesNeurodegenerative DiseasesTDP-43 ProteinopathiesNeuromuscular DiseasesProteostasis DeficienciesMetabolic DiseasesNutritional and Metabolic Diseases

Study Officials

  • Paul Mehta, MD

    Centers for Disease Control and Prevention

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Paul Mehta, MD

CONTACT

770-488-0556PMehta1@cdc.gov

Kevin Horton, DrPH, MSPH

CONTACT

770-488-1555dhorton@cdc.gov

Study Design

Study Type
observational
Observational Model
OTHER
Time Perspective
OTHER
Target Duration
5 Years
Sponsor Type
FED
Responsible Party
SPONSOR

Study Record Dates

First Submitted

January 17, 2013

First Posted

January 21, 2013

Study Start

October 1, 2010

Primary Completion (Estimated)

December 1, 2040

Study Completion (Estimated)

December 1, 2040

Last Updated

April 29, 2026

Record last verified: 2026-04

Locations

US(1)