Morbidity and Mortality Weekly Report (MMWR): Surveillance Summaries, August 2016 / Vol. 65 / No. SS-8

Details

• Alternative Title:
  Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013
• Journal Article:
  Morbidity and Mortality Weekly Report (MMWR): Surveillance Summaries
• Personal Author:
  Mehta, Paul ; Kaye, Wendy ; Bryan, Leah ; Larson, Theodore C. ; Copeland, Timothy ; Wu, Jennife ; Muravov, Oleg ; Horton, Kevin
• Corporate Authors:
  United States Agency for Toxic Substances and Disease Registry
• Description:
  Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a progressive and fatal neuromuscular disease for which no cure or viable treatment has been identified. ALS, like most noncommunicable Diseases, is not a nationally notifiable disease in the United States The prevalence of ALS in the United States during 2010–2011 was estimated to be 3.9 cases per 100,000 persons in the general population. Updated prevalence estimates are needed to help monitor disease status, better understand etiology, and identify risk factors for ALS.
  
  The National ALS Registry, established in 2009, collects data on ALS patients in the United States to better describe the incidence and prevalence of ALS, examine risk factors such as environmental and occupational exposures, and characterize the demographics of those living with ALS. To identify prevalent cases of ALS, data are compiled from four national administrative databases (maintained by the Centers for Medicare and Medicaid Services, the Veterans Health Administration, and the Veterans Benefits Administration). To identify cases not included in these databases and to better understand risk-factors associated with ALS and disease progression, the Registry also includes data that are collected from patients who voluntarily enroll and complete online surveys.
  
  During 2012 and 2013, the Registry identified 14,713 and 15,908 persons, respectively, who met the Surveillance case definition of ALS. The estimated ALS prevalence rate was 4.7 cases per 100,000 U.S. population for 2012 and 5.0 per 100,000 for 2013. Due to revisions to the algorithm and use of death data from the National Death Index, an updated prevalence estimate has been calculated retrospectively for October 19, 2010–December 31, 2011. This updated estimate showed a prevalence rate of 4.3 per 100,000 population and a total of 13,282 cases. Since the inception of the Registry, the pattern of characteristics (e.g., age, sex, and race/ethnicity) among persons with ALS have remained unchanged. Overall, ALS was more common among whites, males, and persons aged 60–69 years. The age groups with the lowest number of ALS cases were persons aged 18–39 years and those aged ≥80 years. Males had a higher prevalence rate of ALS than females overall and across all data sources. These findings remained consistent during October 2010–December 2013.
  
  Suggested citation for this article: Mehta, MD1 P, Kaye, PhD2 W, Bryan, MPH3 L, et al. Prevalence of Amyotrophic Lateral Sclerosis — United States, 2012–2013. MMWR Surveill Summ 2016;65(No. SS-8):1–12. DOI: http://dx.doi.org/10.15585/mmwr.ss6508a1.
  
  
• Subjects:
  Amyotrophic Lateral Sclerosis / epidemiology
• Source:
  Morbidity and Mortality Weekly Report (MMWR): Surveillance Summaries, 2016; v. 65, no. 8
• Series:
  Surveillance Summaries: Morbidity and Mortality Weekly Report (MMWR)
• DOI:
  http://dx.doi.org/10.15585/mmwr.ss6508a1
• ISSN:
  1546-0738 (print) ; 1545-8636 (digital)
• Pubmed ID:
  27490513
• Document Type:
  Journal Issue
• Name as Subject:
  National ALS Registry
• Place as Subject:
  United States
• Pages in Document:
  12 pdf pages
• Volume:
  65
• Issue:
  8
• Collection(s):
  Morbidity and Mortality Weekly Report (MMWR)
• Main Document Checksum:
  urn:sha-512:8509426a86a5058166a44fe0f7d3b3ac11b3cb9eab468a3fc9059b4922b3fb31d562cde2f1a075159151c4dbd4b74d180dac465cc4904119746d793a14481f04
• Download URL:
  https://stacks.cdc.gov/view/cdc/40602/cdc_40602_DS1.pdf
• File Type:
  [PDF - 449.78 KB ]