The National Amyotrophic Lateral Sclerosis Registry

This study is currently recruiting participants. (see Contacts and Locations)
Verified October 2013 by Centers for Disease Control and Prevention
Sponsor:
Collaborators:
Centers for Medicare and Medicaid Services
Information provided by (Responsible Party):
Centers for Disease Control and Prevention
ClinicalTrials.gov Identifier:
NCT01772602
First received: January 17, 2013
Last updated: October 30, 2013
Last verified: October 2013
  Purpose

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
Amyotrophic Lateral Sclerosis

Study Type: Observational [Patient Registry]
Target Follow-Up Duration: 5 Years
Official Title: The National Amyotrophic Lateral Sclerosis Registry

Resource links provided by NLM:


Further study details as provided by Centers for Disease Control and Prevention:

Primary Outcome Measures:
  • The National Amyotrophic Lateral Sclerosis (ALS) Registry [ Time Frame: 1 year ] [ Designated as safety issue: No ]
    To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.


Secondary Outcome Measures:
  • Risk factors of ALS [ Time Frame: 1 year ] [ Designated as safety issue: No ]
    To learn more about the potential risk factors for ALS


Estimated Enrollment: 5000
Study Start Date: October 2010
Estimated Study Completion Date: December 2013
Estimated Primary Completion Date: December 2013 (Final data collection date for primary outcome measure)
  Eligibility

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
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
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, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: 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 Medicare and Medicaid Services
Investigators
Principal Investigator: Paul Mehta, MD Centers for Disease Control and Prevention
  More Information

Additional Information:
No publications provided

Responsible Party: Centers for Disease Control and Prevention
ClinicalTrials.gov Identifier: NCT01772602     History of Changes
Other Study ID Numbers: CDC-NCEH/ATSDR-5768
Study First Received: January 17, 2013
Last Updated: October 30, 2013
Health Authority: United States: Federal Government

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

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

ClinicalTrials.gov processed this record on July 29, 2014