Evaluation of the Completeness of ALS Case Ascertainment in the U.S. National ALS Registry: Application of the Capture-Recapture Method

Key points

Analysis shows that the methods used by the National ALS Registry provide a methodological foundation for estimating ALS prevalence in a large country with fragmented healthcare, and can be used for tracking prevalence of other neurological diseases.

Screenshot of first two pages of paper

Affiliates

Lorene Nelson [1], Barbara Topol [1], Wendy Kaye [2] , Jaime Raymond [3], D. Kevin Horton [3], Paul Mehta [3], Todd Wagner [4]

  1. Department of Epidemiology and Population Health, Stanford University School of Medicine
  2. McKing Consulting Corporation
  3. Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention
  4. Department of Surgery, Stanford University School of Medicine

Journal

Neuroepidemiology

Summary

The Centers for Disease Control and Prevention (CDC) National Amyotrophic Lateral Sclerosis (ALS) Registry is the first national registry for a chronic neurologic disease in the U.S. and uses a combination of case finding methods including administrative healthcare data and patient self-registration. Analysis shows that the methods used by the National ALS Registry provide for an excellent methodological foundation for estimating ALS prevalence in a large country with fragmented healthcare, and can be used for tracking prevalence of other neurological diseases.

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Agency for Toxic Substances and Disease Registry