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Recruiting

NCT Number: NCT01772602

The National Amyotrophic Lateral Sclerosis Registry

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.

Recruiting

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Key information

Conditions

Amyotrophic Lateral Sclerosis Central Nervous System Diseases Metabolic Diseases Motor Neuron Disease Nervous System Diseases Neurodegenerative Diseases Neuromuscular Diseases Nutritional and Metabolic Diseases Proteostasis Deficiencies Spinal Cord Diseases TDP-43 Proteinopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Exclusion criteria

-

Treatment and study plan

Primary outcomes

  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 outcomes

  1. Risk factors of ALS

    Time frame: 1 year

    To learn more about the potential risk factors for ALS

Study contacts

Contact information is provided by the study sponsor or research team.

Kevin Horton, DrPH, MSPH

CONTACT

[email protected]

770-488-1555

Paul Mehta, MD

CONTACT

[email protected]

770-488-0556

Sponsors and collaborators

Lead sponsor

Centers for Disease Control and Prevention

Fed

Collaborators

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

Registry information

Important dates

Study start
2010
Primary completion
2040
Study completion
2040
First posted
Jan 21, 2013
Registry last updated
Apr 29, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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