Objective: Summarize the incidence and prevalence of ALS in all 50 states in the United States (U.S.) from 2010-2018.
Background: In October 2010, the federal Agency for Toxic Substances and Disease Registry (ATSDR) launched the congressionally mandated National ALS Registry to collect and analyze data regarding persons with ALS (PALS) in the U.S. The main goals of the Registry are to determine the incidence and prevalence of ALS within the United States, characterize the demographics of persons living with ALS (PALS), and identify the potential risk factors for the disease.
Design/Methods: As ALS is not a notifiable disease in the U.S., the Registry uses a two-pronged approach to help identify all cases of ALS in the country. The first approach utilizes existing national administrative databases (Medicare, Medicaid, Veterans Health Administration [VHA] and Veterans Benefits Administration [VBA]) to identify prevalent cases. The second method uses a secure web portal to gather voluntary participant data and identify cases not included in the national administrative databases. PALS who register via the web portal can complete surveys that may lead to a better understanding of the potential risk factors for ALS (e.g., genetics, environmental and occupational influences).
Results: State level incidence rates ranged from 0.5 per 100,000 (Alaska) to 2.8 per 100,000 (Vermont). Overall, state level incidence remained steady or increased slightly from 2011 to 2018 while state level prevalence increased during the same time frame. State level prevalence ranged from 3.0 per 100,000 (District of Columbia) to 10.7 per 100,000 (Vermont). EPA Region 1 which includes the northeast part of the United States had the highest prevalence rate at 7.6 per 100,000 and EPA Region 6 which includes the south-central United States had the lowest prevalence rate at 4.6 per 100,000.
Conclusions: This abstract summarizes the incidence and prevalence of ALS for all 50 states from 2010-2018. This is a continuing effort to identify ALS cases on a national population basis in the U.S. The establishment of the National ALS Registry has allowed for the epidemiological analyses of this disease as well as assessing potential risk factors that may cause ALS.