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The National Amyotrophic Lateral Sclerosis Registry

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ClinicalTrials.gov Identifier: NCT01772602
Recruitment Status : Recruiting
First Posted : January 21, 2013
Last Update Posted : February 14, 2018
Sponsor:
Collaborators:
VA Office of Research and Development
Centers for Medicare and Medicaid Services
Information provided by (Responsible Party):
Centers for Disease Control and Prevention

Study Description
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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
Amyotrophic Lateral Sclerosis

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

Study Design
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Study Type : Observational [Patient Registry]
Estimated Enrollment : 16000 participants
Observational Model: Other
Time Perspective: Other
Target Follow-Up Duration: 5 Years
Official Title: The National Amyotrophic Lateral Sclerosis Registry
Study Start Date : October 2010
Estimated Primary Completion Date : December 2022
Estimated Study Completion Date : December 2022

Resource links provided by the National Library of Medicine


Groups and Cohorts
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Outcome Measures
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Primary Outcome Measures :
  1. The National Amyotrophic Lateral Sclerosis (ALS) Registry [ Time Frame: 1 year ]
    To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.


Secondary Outcome Measures :
  1. Risk factors of ALS [ Time Frame: 1 year ]
    To learn more about the potential risk factors for ALS


Eligibility Criteria
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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
ALS cases in the United States
Criteria

Inclusion Criteria:

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

Exclusion Criteria:

Contacts and Locations
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Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01772602


Contacts
Contact: Paul Mehta, MD 770-488-0556 PMehta1@cdc.gov
Contact: Kevin Horton, DrPH, MSPH 770-488-1555 dhorton@cdc.gov

Locations
United States, Georgia
CDC Recruiting
Atlanta, Georgia, United States, 30333
Contact: Paul Mehta, MD    770-488-0556    PMehta1@cdc.gov   
Contact: Kevin Horton, DrPH, MSPH    770-488-1555    dhorton@cdc.gov   
Principal Investigator: Paul Mehta, MD         
Sponsors and Collaborators
Centers for Disease Control and Prevention
VA Office of Research and Development
Centers for Medicare and Medicaid Services
Investigators
Principal Investigator: Paul Mehta, MD Centers for Disease Control and Prevention
More Information
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Additional Information:
Click here to enroll in the National ALS Registry  This link exits the ClinicalTrials.gov site

Responsible Party: Centers for Disease Control and Prevention
ClinicalTrials.gov Identifier: NCT01772602     History of Changes
Other Study ID Numbers: CDC-NCEH/ATSDR-5768
First Posted: January 21, 2013    Key Record Dates
Last Update Posted: February 14, 2018
Last Verified: January 2018

Keywords provided by Centers for Disease Control and Prevention:
Amyotrophic Lateral Sclerosis
Lou Gehrig's Disease
Motor Neuron Disease

Additional relevant MeSH terms:
Sclerosis
Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Pathologic Processes
Neurodegenerative Diseases
Nervous System Diseases
 Neuromuscular Diseases
Spinal Cord Diseases
Central Nervous System Diseases
TDP-43 Proteinopathies
Proteostasis Deficiencies
Metabolic Diseases