Evaluation of the Completeness of ALS Case Ascertainment in the U.S. National ALS Registry: Application of the Capture-Recapture Method
Affiliates | Lorene Nelson [1], Barbara Topol [1], Wendy Kaye [2] , Jaime Raymond [3], D. Kevin Horton [3], Paul Mehta [3], Todd Wagner [4]
[1] Department of Epidemiology and Population Health, Stanford University School of Medicine |
Journal | Neuroepidemiology |
Summary | The Centers for Disease Control and Prevention (CDC) National Amyotrophic Lateral Sclerosis (ALS) Registry is the first national registry for a chronic neurologic disease in the U.S. and uses a combination of case finding methods including administrative healthcare data and patient self-registration. Analysis shows that the methods used by the National ALS Registry provide for an excellent methodological foundation for estimating ALS prevalence in a large country with fragmented healthcare, and can be used for tracking prevalence of other neurological diseases. |
Link to paper | Read the paper here! |