The National Amyotrophic Lateral Sclerosis Registry

February 6, 2024 updated by: Centers for Disease Control and Prevention
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.

Study Overview

Status

Recruiting

Conditions

Detailed Description

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

Study Type

Observational

Enrollment (Estimated)

30000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

  • Name: Kevin Horton, DrPH, MSPH
  • Phone Number: 770-488-1555
  • Email: dhorton@cdc.gov

Study Locations

  • United States
    • Georgia
      • Atlanta, Georgia, United States, 30333
        • Recruiting
        • CDC
        • Contact:
        • Contact:
          • Kevin Horton, DrPH, MSPH
          • Phone Number: 770-488-1555
          • Email: dhorton@cdc.gov
        • Principal Investigator:
          • Paul Mehta, MD

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

ALS cases in the United States

Description

Inclusion Criteria:

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

Exclusion Criteria:

-

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
The National Amyotrophic Lateral Sclerosis (ALS) Registry
Time Frame: 1 year
To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.
1 year

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Risk factors of ALS
Time Frame: 1 year
To learn more about the potential risk factors for ALS
1 year

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Centers for Disease Control and Prevention

Collaborators

US Department of Veterans Affairs
Centers for Medicare and Medicaid Services

Investigators

  • Principal Investigator: Paul Mehta, MD, Centers for Disease Control and Prevention

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

October 1, 2010

Primary Completion (Estimated)

December 1, 2030

Study Completion (Estimated)

December 1, 2030

Study Registration Dates

First Submitted

January 17, 2013

First Submitted That Met QC Criteria

January 18, 2013

First Posted (Estimated)

January 21, 2013

Study Record Updates

Last Update Posted (Actual)

February 7, 2024

Last Update Submitted That Met QC Criteria

February 6, 2024

Last Verified

February 1, 2024

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • CDC-NCEH/ATSDR-5768

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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