News from the National ALS Registry

The ALS Registry Act, passed in 2008, authorized establishment of a National ALS Registry with the goals of defining amyotrophic lateral sclerosis (ALS) incidence and prevalence, characterizing ALS patients' demographics, and examining risk factors. The registry uses two sources of data: 80% derives from administrative data (from the Centers for Medicare and Medicaid Services, the Veterans Health Administration and the Veterans Benefits Administration) and 20% from a Web-based portal that patients with ALS can use for self-identification and enrollment. The registry excludes duplicates and uses a strict case definition based on ICD codes, death certificate data, and riluzole prescriptions. The registry administrators now report prevalence f…