Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Office of Innovation and Analytics, National ALS Registry, GA, USA and.
Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Office of Community Health and Hazard Assessment, Atlanta, GA, USA.
Amyotroph Lateral Scler Frontotemporal Degener. 2022 Aug;23(5-6):378-382. doi: 10.1080/21678421.2021.2023190. Epub 2022 Jan 13.
To estimate the incidence of amyotrophic lateral sclerosis (ALS) in the United States for calendar years 2014-2016 using data from the National ALS Registry (Registry). The Registry collects data on ALS patients in the United States 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 incident 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). For cases that are not included in these databases, the Registry includes data collected from patients who voluntarily enroll a secure web portal. The Registry identified 5695 ALS cases in 2014; 6045 cases in 2015; and 4861 cases in 2016 for age-adjusted incidence rates of 1.7 (2014), 1.5 (2015), and 1.5 (2016) per 100,000 U.S. population, respectively. ALS was more common among whites, males, and persons aged 60-79 years. This is the first time administrative and self-reported databases have been used to describe the incidence of ALS for the United States resulting in a better estimate of disease demographics.
利用国家肌萎缩侧索硬化症登记处（登记处）的数据，估算 2014-2016 年美国肌萎缩侧索硬化症（ALS）的发病率。该登记处收集美国 ALS 患者的数据，以更好地描述 ALS 的流行病学，检查环境和职业暴露等风险因素，并描述患有该病的人群特征。为了确定成人新发 ALS 病例，登记处从三个国家管理数据库（由医疗保险和医疗补助服务中心、退伍军人健康管理局和退伍军人福利管理局维护）中编译数据。对于未包含在这些数据库中的病例，登记处包括从自愿注册安全门户网站的患者中收集的数据。登记处于 2014 年确定了 5695 例 ALS 病例；2015 年为 6045 例；2016 年为 4861 例，年龄调整后的发病率分别为每 10 万美国人口 1.7（2014 年）、1.5（2015 年）和 1.5（2016 年）。ALS 在白人、男性和 60-79 岁人群中更为常见。这是首次利用管理和自我报告数据库来描述美国 ALS 的发病率，从而更好地估计疾病人群特征。
