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

Key points

Calculates the 2017 prevalence of ALS in the adult US population using the National ALS Registry self-enrollment portal, the national administrative databases, and capture–recapture methodology for the evaluation of missing cases.

Screenshot of first two pages of paper

Affiliates

Paul Mehta[1], Jaime Raymond[1], Reshma Punjani[1], Moon Han[1], Theodore Larson[1], Wendy Kaye[2], Lorene M. Nelson[3], Barbara Topol[3], Oleg Muravov[1], Corina Genson[1], and D. Kevin Horton[1]

  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.

Link to Paper

Read the paper here!

Print
Content Source:
Agency for Toxic Substances and Disease Registry