The National ALS Registry was created in 2009 by the federal Agency for Toxic Substances and Disease Registry (ATSDR) as a congressionally mandated registry of ALS patients in the United States (U.S.). The registry aims to collect information about the prevalence of ALS in the U.S., and to identify potential risk factors for ALS.
The registry collects data using two distinct avenues to collect data on ALS cases: national databases and a secure web portal. The national databases include Medicare, Medicaid, the Veterans Health Administration (VHA) and Veterans Benefits Administration (VBA). The secure portal, which was launched in October 2010, collects information from patients directly with questionnaires about risk factors, such as environmental and occupational exposures.
Malek AM et. al. The National ALS Registry: a recruitment tool for research. Muscle Nerve. 2014 Nov;50(5):830-4.Pubmed.
Mehta, P et. al. Prevalence of amyotrophic lateral sclerosis – United States, 2010-2011. MMWR Suppl. 2014 Jul 25;63(7):1-14.Pubmed.