Prevalence of Amyotrophic Lateral Sclerosis — United States, 2014

Mehta, Paul; Kaye, Wendy; Raymond, Jaime; Wu, Rui; Larson, Theodore; Punjani, Reshma; Heller, Daniel; Cohen, Jessica; Peters, Tracy L.; Muravov, Oleg; Horton, D. Kevin

doi:10.15585/mmwr.mm6707a3

Cited by 259 publications

(119 citation statements)

References 3 publications

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“…This algorithm improvement has resulted in an updated prevalence rate from October 19, 2010-December 31, 2011 of 4.3 per 100,000 population and a total of 13,282 cases. This slight increase in ALS prevalence from 3.9 and 12,187 cases as published in the previous report (6) likely reflects better case ascertainment as a result of the revised algorithm. For calendar years 2012 and 2013, prevalence rates were 4.7 and 5.0, respectively.…”

Section: Discussionsupporting

confidence: 55%

“…This updated estimate showed a prevalence rate of 4.3 per 100,000 population and a total of 13,282 cases. This was a slight increase from the initial prevalence estimate of 3.9 per 100,000 persons and 12,187 cases of "definite ALS" (6). Prevalence rates for specific age groups, and for males and females as well as whites and blacks, did not change substantially.…”

Section: Revised Prevalence 2010-2011mentioning

confidence: 69%

“…This approach allows patients to selfidentify and enroll in the National ALS Registry if screening criteria are met. An additional advantage of this approach is those who self-enroll in the Registry can take brief surveys that are used to evaluate possible risk factors for ALS (6). Information is merged into a single record for each person.…”

Section: Methodsmentioning

confidence: 99%

“…Several potential risk factors for ALS have been identified. Whites, males, non-Hispanics, those aged >60 years, and those with a family history of the disease are more likely to develop ALS (1,6). Previous exposure to heavy metals (e.g., lead and chromium), pesticides, and ß-N-methylamino-L-alanine (BMAA) produced by cyanobacteria also have been associated with an increased risk for ALS (7)(8)(9)(10)(11).…”

Section: Introductionmentioning

confidence: 99%

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Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013

Mehta

Kaye

Bryan

et al. 2016

MMWR Surveill. Summ.

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121

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Section: Discussionsupporting

confidence: 55%

Section: Revised Prevalence 2010-2011mentioning

confidence: 69%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013

Mehta

Kaye

Bryan

et al. 2016

MMWR Surveill. Summ.

Self Cite

121

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“…More than 6,000 diseases meet this definition, affecting 25 million Americans in total, and approximately 360 of these rare diseases are primarily neurological, including amyotrophic lateral sclerosis and Huntington disease (18,000-30,000 each), frontotemporal dementia (48,000), and myasthenia gravis (64,000), among many others. [42][43][44][45] The epidemiology and total costs of rare neurological diseases are poorly characterized, and no well-developed estimates are available. However, given the severity of many of these disorders and their aggregate burden, it is reasonable to assume substantial direct and indirect medical expenditures.…”

Section: Less Common Neurological Diseasesmentioning

confidence: 99%

The burden of neurological disease in theUnitedStates: A summary report and call to action

Gooch

Pracht

Borenstein

2017

Annals of Neurology

331

219

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Quantifying a Nonnotifiable Disease in the United States

Horton

Mehta

Antao

2014

JAMA

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Public health surveillance is an essential tool for assessing, controlling, and preventing disease. In the United States, public health surveillance has evolved from a focus on monitoring infectious diseases to also tracking injuries, chronic diseases, birth defects, environmental and occupational exposures, and risk factors. 1 Despite this evolution of surveillance topics, many conditions still are not notifiable to federal public health officials nor are there surveillance systems in place to capture such conditions. The lack of morbidity data for nonnotifiable conditions makes it difficult to access accurately the populations at greatest risk and the true economic and societal burden of such diseases. New approaches are needed to more accurately quantify nonnotifiable conditions of interest in the United States, such as amyotrophic lateral sclerosis (ALS). ALS, also known as Lou Gehrig disease, is a rare disease that affects the upper and lower motor neurons and usually leads to death within 2 to 5 years after diagnosis. 2 In 2008, the US Congress passed the ALS Registry Act, 3 intended to create a national ALS registry to better describe the incidence and prevalence of ALS, define demographic characteristics of those with ALS, and examine risk factors that may be related to the development of ALS, such as environmental and occupational exposures. Even though the act did not make ALS a notifiable disease, it did allow for the creation of a national population-based registry to collect and analyze data regarding persons living with ALS in the United States. In 2009, the federal Agency for Toxic Substances and Disease Registry (ATSDR), a sister agency of the Centers for Disease Control and Prevention (CDC), launched the National ALS Registry. This registry undertook a novel approach to quantify the burden of ALS using data from national administrative sources and a self-enrollment web portal. Data from both sources are merged and de-duplicated to ensure an accurate case count.

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Prevalence of Amyotrophic Lateral Sclerosis — United States, 2014

Cited by 259 publications

References 3 publications

Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013

Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013

The burden of neurological disease in theUnitedStates: A summary report and call to action

Quantifying a Nonnotifiable Disease in the United States

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