Evaluating the completeness of the national ALS registry, United States

Affiliates Wendy E. Kaye [1], Laurie Wagner [1], Ruoming Wu [2], Paul Mehta [2]


[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.
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