Estimation of the prevalence of amyotrophic lateral sclerosis in the United States using national administrative healthcare data from 2002 to 2004 and capture-recapture methodology
| Affiliates | Lorene M. Nelson [1], Barbara Topol [1], Wendy Kaye [2], David Williamson [3], D. Kevin Horton [3], Paul Mehta [3], and Todd Wagner [1,4]
[1] Department of Health Research and Policy, Stanford School of Medicine |
| Journal | Neuroepidemiology |
| Summary | This study used three sources (Medicare, Medicaid, and Veterans Administration data) to locate PALS and estimate the prevalence of ALS in the United States for 2002–2004. Additionally, it applied a capture-recapture methodology to estimate the degree to which cases were missing when relying solely on these sources for case identification. Case-finding completeness was 76% overall; this did not vary by race, but by gender and age. Findings from this study suggest that federal healthcare claims databases are very efficient for identifying the majority of ALS-prevalent cases in the National ALS Registry; however, they can be enhanced via patient self-registration in the Registry portal. |
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