Feasibility of creating a National ALS Registry using administrative data in the United States

Affiliates Wendy E. Kaye [1], Marchelle Sanchez [2], Jennifer Wu [2]


[1] McKing Consulting Corporation
[2] Agency for Toxic Substances and Disease Registry and Centers for Disease Control and Prevention

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This study aims to evaluate the feasibility of using existing administrative data to identify cases of ALS. Analyzing data from Medicare, Medicaid, the Veterans Health Administration, and Veterans Benefits Administration, various algorithms aimed at identifying true cases of ALS were assessed for sensitivity and specificity. Medical chart were reviewed by physicians to confirm ALS diagnosis. Categorizing patients into those with ALS, possible ALS, or no ALS, the most successful algorithm had a sensitivity of 87% and specificity of 85%. Concluding, administrative data can be useful in establishing a national ALS registry.
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