Utility of capture-recapture methodology to assess completeness of amyotrophic lateral sclerosis case ascertainment

Key points

Determining completeness of ALS case ascertainment

Affiliates

Michael Wittie1, Lorene M. Nelson2, Sharon Usher3, Kevin Ward4, Michael Benatar5

  1. Washington, D.C.
  2. Division of Epidemiology, Department of Health Research and Policy, Stanford University School of Medicine
  3. Department of Neurology, University of South Florida
  4. Department of Epidemiology, Rollins School of Public Health, Emory University
  5. Department of Neurology, Miller School of Medicine, University of Miami

Journal

Neuroepidemiology

Summary

This study implements capture-recapture methods to assess the completeness of ALS case ascertainment using existing data sources. This study highlights gaps in research based on existing data sources and illustrates a method for combing data from multiple sources to help establish the US national ALS registry. To increase the effectiveness of capture-recapture studies, the most complete sets of data should be used, and more than two sources should be used.

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Agency for Toxic Substances and Disease Registry