Evaluation of the Completeness of ALS Case Ascertainment in the U.S. National ALS Registry: Application of the Capture-Recapture Method

Conclusion: Our findings indicate that administrative healthcare databases are a very efficient method for identifying the majority of ALS prevalent cases in the National ALS Registry and that the inclusion of a web registry portal for patients to self-register is important to ensure a more representative population for estimating ALS prevalence. Nonetheless, more than 40% of ALS cases were not ascertained by the Registry, with individuals younger than age 65 and people of color underrepresented. Recommendations are provided for additional methods that can be considered to improve the completeness of case ascertainment.
Source: Neuroepidemiology - Category: Epidemiology Source Type: research