Mehta Paul, Raymond Jaime, Punjani Reshma, Larson Theodore, Bove Frank, Kaye Wendy, Nelson Lorene M, Topol Barbara, Han Moon, Muravov Oleg, Genson Corina, Davis Bryn, Hicks Thomas, Horton Kevin
Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USA.
McKing Consulting Corporation, Atlanta, GA, USA.
Amyotroph Lateral Scler Frontotemporal Degener. 2022 May;23(3-4):220-225. doi: 10.1080/21678421.2021.1949021. Epub 2021 Aug 23.
To estimate the prevalence of amyotrophic lateral sclerosis (ALS) in the United States for 2016 using data from the National ALS Registry (Registry). Established in 2009, the Registry collects data on ALS patients in the U.S. to better describe the epidemiology of ALS, examine risk factors such as environmental and occupational exposures, and characterize the demographics of those living with the disease. To identify adult prevalent cases of ALS, the Registry compiles data from three national administrative databases (maintained by the Centers for Medicare and Medicaid Services, the Veterans Health Administration, and the Veterans Benefits Administration). To ascertain cases not necessarily included in these databases and to better understand risk-factors associated with ALS and disease progression, the Registry also includes data collected from patients who voluntarily enroll via a web portal to complete online surveys. In 2016, the Registry conservatively identified 16,424 adult persons who met the Registry definition of ALS for an age-adjusted prevalence rate of 5.2 per 100,000 U.S. population. The pattern of patient characteristics (e.g., age, sex, and race/ethnicity) has not changed from previous Registry reports. Overall, ALS was more common among whites, males, and persons aged 60-69 years. The age groups with the lowest number of ALS cases were persons aged 18-39 years. Males had a higher prevalence rate of ALS than females overall and across all data sources. Data collected by the National ALS Registry are being used to better describe the epidemiology and demographics of ALS in the U.S.
利用国家肌萎缩侧索硬化症登记处（登记处）的数据估算2016年美国肌萎缩侧索硬化症（ALS）的患病率。登记处成立于2009年，收集美国ALS患者的数据，以更好地描述ALS的流行病学情况，研究环境和职业暴露等风险因素，并描述患该疾病人群的人口统计学特征。为了确定成年ALS现患病例，登记处整合了三个国家行政数据库（由医疗保险和医疗补助服务中心、退伍军人健康管理局以及退伍军人福利管理局维护）的数据。为了确定这些数据库中不一定包含的病例，并更好地了解与ALS及疾病进展相关的风险因素，登记处还纳入了通过门户网站自愿报名完成在线调查的患者所提供的数据。2016年，登记处保守地确定了16424名符合登记处ALS定义的成年人，年龄调整患病率为每10万美国人口5.2例。患者特征模式（如年龄、性别和种族/族裔）与登记处以前的报告没有变化。总体而言，ALS在白人、男性以及60 - 69岁人群中更为常见。ALS病例数最少的年龄组是18 - 39岁的人群。总体而言，在所有数据源中，男性的ALS患病率均高于女性。国家肌萎缩侧索硬化症登记处收集的数据正用于更好地描述美国ALS的流行病学和人口统计学情况。
