Accuracy and usefulness of ICD-10 death certificate coding for the identification of patients with ALS: results from the South Carolina ALS Surveillance Pilot Project

Publication
Affiliates	David E. Sticker [1], Julie A. Royer [2], James W. Hardin [3] [1] Department of Neurosciences, Medical University of South Carolina [2] Office of Research and Statistics, South Carolina Budget and Control Board [3] Department of Epidemiology and Biostatistics, University of South Carolina
Journal	Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary	This study sought to estimate the positive predictive value (PPV) and sensitivity of the ICD-10 code G12.2 for identifying ALS mortalities. Death certificate data were obtained from the SC Budget and Control Board Office of Research and Statistics to estimate the PPV and sensitivity of the ICD-10 code G12.2 to identify potential cases of ALS in SC, compared to a known cohort of ALS patients. The estimated sensitivity was 85% and the PPV was 65%. While there are validity issues using mortality data, these findings suggest that mortality data can be used in the development of case-finding algorithms to identify PALS.
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Page last reviewed: October 21, 2021