Evaluating the completeness of the national ALS registry, United States

At a glance

A study evaluating the completeness of the National ALS Registry

Affiliates

Wendy E. Kaye1, Laurie Wagner1, Ruoming Wu2, Paul Mehta2

  1. McKing Consulting Corporation
  2. Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Sciences

Journal

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Summary

This study evaluates the completeness of the US National ALS Registry. To do so, comparisons were made between the PALS identified by the Registry with those actively identified by the State and Metropolitan Area ALS Surveillance project. These comparisons identified subgroups of the population that are more likely to be missing from the Registry. However, the Registry has been able to increase the number of cases detected since the first report on the Registry completeness.

Link to paper

Find the paper here!

Print
Content Source:
Agency for Toxic Substances and Disease Registry