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

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

SUBMITTER: Bryan L

PROVIDER: S-EPMC4849726 | biostudies-other | 2016

REPOSITORIES: biostudies-other

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Project description:BackgroundAmyotrophic lateral sclerosis (ALS) is a neurological disease of largely unknown etiology with no cure. The National ALS Registry is a voluntary online system that collects demographic and reproductive history (females only) data from patients with ALS. We will examine the association between demographic and reproductive history among female patients aged >18 years and various ages of onset for ALS.MethodsData from a cross-sectional study were collected and examined for 1,018 female ALS patients. Patient characteristics examined were demographics including race, BMI, and familial history of ALS. Among patients, information on reproductive history, including age at menopause, ever pregnant, and age at first pregnancy was collected. Unadjusted and adjusted logistic regression models were used to estimate OR and 95% CI in this study.ResultsWomen were more likely to be diagnosed with ALS before age 60 if they were nonwhite (p = 0.015), had attended college (p = 0.0012), had a normal BMI at age 40 (p < 0.0001), completed menopause before age 50 (p < 0.0001), and had never been pregnant (p = 0.046) in the univariate analysis. Women diagnosed with ALS before age 60 were also more likely to have limb site of onset (p < 0.0001). In the multivariate analysis, those who completed menopause before age 50 were more likely to be diagnosed with ALS before age 60 (OR = 1.8, 95% CI: 1.4-2.3) compared with women who completed menopause at or after age 50, after controlling for race, ever pregnant, age at first pregnancy, family history of ALS, education status, smoking history, and BMI at age 40. For women who were diagnosed with ALS before age 50, the odds of them entering menopause before age 50 climb to 48.7 (95% CI: 11.8, 200.9). The mean age of ALS diagnosis for women who completed menopause before age 50 was 58 years and 64 years for women who entered menopause after age 50 (p < 0.0001).ConclusionWomen who reported completing menopause before age 50 were significantly more likely to be diagnosed with ALS before age 60 compared with those who reported entering menopause after age 50. More research is needed to determine the relationship between female reproductive history, especially regarding endogenous estrogen exposure and early-onset ALS.

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

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