Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2016 Apr 28;11(4):e0153683.
doi: 10.1371/journal.pone.0153683. eCollection 2016.

Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data

Leah Bryan  1 , Wendy Kaye  2 , Vinicius Antao  3 , Paul Mehta  3 , Oleg Muravov  3 , D Kevin Horton  3
Affiliations

Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data

Leah Bryan et al. PLoS One. .

Abstract

Background: The National ALS Registry is made up of two components to capture amyotrophic lateral sclerosis (ALS) cases: national administrative databases (Medicare, Medicaid, Veterans Health Administration and Veterans Benefits Administration) and self-identified cases captured by the Registry's web portal. This study describes self-reported characteristics of U.S. adults with ALS using the data collected by the National ALS Registry web portal risk factor surveys only from October 19, 2010 through December 31, 2013.

Objective: To describe findings from the National ALS Registry's web portal risk factor surveys.

Measurements: The prevalence of select risk factors among adults with ALS was determined by calculating the frequencies of select risk factors-smoking and alcohol (non, current and former) histories, military service and occupational history, and family history of neurodegenerative diseases such as ALS, Alzheimer's and/or Parkinson's.

Results: Nearly half of survey respondents were ever smokers compared with nearly 41% of adults nationally. Most respondents were ever drinkers which is comparable to national estimates. The majority were light drinkers. Nearly one-quarter of survey respondents were veterans compared with roughly 9% of US adults nationally. Most respondents were retired or disabled. The industries in which respondents were employed for the longest time were Professional and Scientific and Technical Services. When family history of neurodegenerative diseases in first degree relatives was evaluated against our comparison group, the rates of ALS were similar, but were higher for Parkinson's disease, Alzheimer's disease and any neurodegenerative diseases.

Conclusions: The National ALS Registry web portal, to our knowledge, is the largest, most geographically diverse collection of risk factor data about adults living with ALS. Various characteristics were consistent with other published studies on ALS risk factors and will allow researchers to generate hypotheses for future research.

PubMed Disclaimer

Conflict of interest statement

Competing Interests: Drs. Mehta, Muravov, Antao, and Horton were employees of the federal government when this work was done. Leah Bryan and Dr. Wendy Kaye are paid contractors for the National ALS Registry. Leah Bryan is employed by Carter Consulting Incorporated. Dr. Wendy Kaye is employed by McKing Consulting Corporation. There are no patents, products in development, or marketed products to declare. There are no other competing interests for the submitted research. This does not alter the authors' adherence to all the PLOS ONE policies on sharing data and materials, as detailed online in the guide for authors.

References

    1. Mitsumoto H, Chad DA, Pioro EP. Amyotrophic lateral sclerosis. Philadelphia: F.A. Davis Company; 1998.
    1. Andersen PM, Al-Chalabi A. Clinical genetics of amyotrophic lateral sclerosis: what do we really know? Nature Reviews Neurology. 2011;7:603–15 - PubMed
    1. Antao V, Horton DK. The national amyotrophic lateral sclerosis (ALS) registry. Journal of Environmental Health. 2012;75(1):28–30. - PMC - PubMed
    1. Mehta P, Antao V, Kaye W, Sanchez M, Williamson D, Bryan L, et al. Prevalence of Amyotrophic Lateral Sclerosis—United States, 2010–2011. Morbidity and Mortality Weekly Report. 2014;63(SS07):1–13. - PubMed
    1. Plato CC, Galasko D, Garruto RM, Plato M, Gamst A, Craig UK, et al. ALS and PDC of Guam Forty-year follow-up. Neurology. 2002;58:765–73. - PubMed

Publication types