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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 : July 23, 2019
Sponsor:
Collaborators:
US Department of Veterans Affairs
Centers for Medicare and Medicaid Services
Information provided by (Responsible Party):
Centers for Disease Control and Prevention

Tracking Information
First Submitted Date January 17, 2013
First Posted Date January 21, 2013
Last Update Posted Date July 23, 2019
Study Start Date October 2010
Estimated Primary Completion Date December 2025   (Final data collection date for primary outcome measure)
Current Primary Outcome Measures
 (submitted: January 22, 2013)
The National Amyotrophic Lateral Sclerosis (ALS) Registry [ Time Frame: 1 year ]
To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.
Original Primary Outcome Measures
 (submitted: January 18, 2013)
The National Amyotrophic Lateral Sclerosis (ALS) Registry [ Time Frame: ongoing ]
To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.
Change History
Current Secondary Outcome Measures
 (submitted: January 22, 2013)
Risk factors of ALS [ Time Frame: 1 year ]
To learn more about the potential risk factors for ALS
Original Secondary Outcome Measures Not Provided
Current Other Pre-specified Outcome Measures Not Provided
Original Other Pre-specified Outcome Measures Not Provided
 
Descriptive Information
Brief Title The National Amyotrophic Lateral Sclerosis Registry
Official Title The National Amyotrophic Lateral Sclerosis Registry
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.
Detailed Description The National ALS Registry's Research Notification System allows person with ALS to participate in clinical trials.
Study Type Observational [Patient Registry]
Study Design Observational Model: Other
Time Perspective: Other
Target Follow-Up Duration 5 Years
Biospecimen Not Provided
Sampling Method Non-Probability Sample
Study Population ALS cases in the United States
Condition Amyotrophic Lateral Sclerosis
Intervention Not Provided
Study Groups/Cohorts Not Provided
Publications * Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Recruitment Information
Recruitment Status Recruiting
Estimated Enrollment
 (submitted: July 22, 2019)
17000
Original Estimated Enrollment
 (submitted: January 18, 2013)
4884
Estimated Study Completion Date December 2025
Estimated Primary Completion Date December 2025   (Final data collection date for primary outcome measure)
Eligibility Criteria

Inclusion Criteria:

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

Exclusion Criteria:

-

Sex/Gender
Sexes Eligible for Study: All
Ages 18 Years and older   (Adult, Older Adult)
Accepts Healthy Volunteers No
Contacts
Contact: Paul Mehta, MD 770-488-0556 PMehta1@cdc.gov
Contact: Kevin Horton, DrPH, MSPH 770-488-1555 dhorton@cdc.gov
Listed Location Countries United States
Removed Location Countries  
 
Administrative Information
NCT Number NCT01772602
Other Study ID Numbers CDC-NCEH/ATSDR-5768
Has Data Monitoring Committee No
U.S. FDA-regulated Product Not Provided
IPD Sharing Statement Not Provided
Responsible Party Centers for Disease Control and Prevention
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
PRS Account Centers for Disease Control and Prevention
Verification Date July 2019