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The National Amyotrophic Lateral Sclerosis Registry

Sponsor
Centers for Disease Control and Prevention (U.S. Fed)
Overall Status
Recruiting
CT.gov ID
NCT01772602
Collaborator
US Department of Veterans Affairs (U.S. Fed), Centers for Medicare and Medicaid Services (U.S. Fed)
17,000
Enrollment
1
Location
242
Duration (Months)
70.2
Patients Per Site Per Month

Study Details

Study Description

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.

Condition or Disease Intervention/Treatment Phase

    Detailed Description

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

    Study Design

    Study Type:
    Observational [Patient Registry]
    Anticipated Enrollment :
    17000 participants
    Observational Model:
    Other
    Time Perspective:
    Other
    Official Title:
    The National Amyotrophic Lateral Sclerosis Registry
    Study Start Date :
    Oct 1, 2010
    Anticipated Primary Completion Date :
    Dec 1, 2030
    Anticipated Study Completion Date :
    Dec 1, 2030

    Outcome Measures

    Primary Outcome Measures

    1. 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

    1. Risk factors of ALS [1 year]

      To learn more about the potential risk factors for ALS

    Eligibility Criteria

    Criteria

    Ages Eligible for Study:
    18 Years and Older
    Sexes Eligible for Study:
    All
    Accepts Healthy Volunteers:
    No
    Inclusion Criteria:
    • U.S. citizens 18 years of age or older
    Exclusion Criteria:

    Contacts and Locations

    Locations

    Site City State Country Postal Code
    1 CDC Atlanta Georgia United States 30333

    Sponsors and Collaborators

    • Centers for Disease Control and Prevention
    • US Department of Veterans Affairs
    • Centers for Medicare and Medicaid Services

    Investigators

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

    Study Documents (Full-Text)

    None provided.

    More Information

    Additional Information:

    Publications

    None provided.
    Responsible Party:
    Centers for Disease Control and Prevention
    ClinicalTrials.gov Identifier:
    NCT01772602
    Other Study ID Numbers:
    • CDC-NCEH/ATSDR-5768
    First Posted:
    Jan 21, 2013
    Last Update Posted:
    May 13, 2022
    Last Verified:
    May 1, 2022
    Keywords provided by Centers for Disease Control and Prevention
    Amyotrophic Lateral Sclerosis
    Lou Gehrig's Disease
    Motor Neuron Disease
    Additional relevant MeSH terms:
    Motor Neuron Disease
    Amyotrophic Lateral Sclerosis
    Sclerosis

    Study Results

    No Results Posted as of May 13, 2022