We're building a better ClinicalTrials.gov. Check it out and tell us what you think!
Working…
ClinicalTrials.gov
ClinicalTrials.gov Menu

The National Amyotrophic Lateral Sclerosis Registry

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
 
ClinicalTrials.gov Identifier: NCT01772602
Recruitment Status : Recruiting
First Posted : January 21, 2013
Last Update Posted : May 13, 2022
Sponsor:
Collaborators:
US Department of Veterans Affairs
Centers for Medicare and Medicaid Services
Information provided by (Responsible Party):
Centers for Disease Control and Prevention

Study Description
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information
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
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

Layout table for study information
Study Type : Observational [Patient Registry]
Estimated Enrollment : 17000 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 2030
Estimated Study Completion Date : December 2030

Resource links provided by the National Library of Medicine


Groups and Cohorts
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information


Outcome Measures
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

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
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


Layout table for eligibility information
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
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information

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
Layout table for location contacts
Contact: Paul Mehta, MD 770-488-0556 PMehta1@cdc.gov
Contact: Kevin Horton, DrPH, MSPH 770-488-1555 dhorton@cdc.gov

Locations
Layout table for location information
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
US Department of Veterans Affairs
Centers for Medicare and Medicaid Services
Investigators
Layout table for investigator information
Principal Investigator: Paul Mehta, MD Centers for Disease Control and Prevention
More Information
Go to 
Top of Page Study Description Study Design Groups and Cohorts Outcome Measures Eligibility Criteria Contacts and Locations More Information
Additional Information:

Layout table for additonal information
Responsible Party: Centers for Disease Control and Prevention
ClinicalTrials.gov Identifier: NCT01772602    
Other Study ID Numbers: CDC-NCEH/ATSDR-5768
First Posted: January 21, 2013    Key Record Dates
Last Update Posted: May 13, 2022
Last Verified: May 2022
Keywords provided by Centers for Disease Control and Prevention:
Amyotrophic Lateral Sclerosis
Lou Gehrig's Disease
Motor Neuron Disease
Additional relevant MeSH terms:
Layout table for MeSH terms
Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Sclerosis
Pathologic Processes
Neurodegenerative Diseases
Nervous System Diseases
 Neuromuscular Diseases
Spinal Cord Diseases
Central Nervous System Diseases
TDP-43 Proteinopathies
Proteostasis Deficiencies
Metabolic Diseases