Prevalence of amyotrophic lateral sclerosis in the United States using established and novel methodologies, 2017

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Affiliates Paul Mehta1 , Jaime Raymond1 , Reshma Punjani1 , Moon Han1 , Theodore Larson1 , Wendy Kaye2 , Lorene M. Nelson3 , Barbara Topol3 , Oleg Muravov1 , Corina Genson1 , and D. Kevin Horton1

[1] Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry, National ALS Registry (CDC/ATSDR)
[2] McKing Consulting Corporation
[3] Department of Epidemiology and Population Health, Stanford University School of Medicine
Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This paper includes new methodologies for estimating the prevalence of ALS. Traditional Registry methods for estimating prevalence calculated age-adjusted prevalence at 5.5 per 100,000 persons. Using capture-recapture methodology, a “mean case count” of 24,821 cases were located and the prevalence was estimated at 7.7 per 100,000 persons. The upper bound estimates of prevalence were 9,9 per 100,000 persons. Existing Registry methodology, along with capture-recapture methodology, are being used to better describe the epidemiology and demographics of ALS in the US.
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