Mehta Paul, Raymond Jaime, Zhang Yuzi, Punjani Reshma, Han Moon, Larson Theodore, Muravov Oleg, Lyles Robert H, Horton D Kevin
Office of Innovation and Analytics, National ALS Registry, Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USA and.
Department of Biostatistics and Bioinformatics, Rollins School of Public Health, Emory University, Atlanta, GA, USA.
Amyotroph Lateral Scler Frontotemporal Degener. 2023 Aug 21:1-7. doi: 10.1080/21678421.2023.2245858.
OBJECTIVE: To estimate prevalent ALS cases in the United States for calendar year 2018. METHODS: The National ALS Registry (Registry) compiled data from national administrative databases (from the Centers for Medicare and Medicaid Services, the Veterans Health Administration, and the Veterans Benefits Administration) and enrollment data voluntarily submitted through a web portal (www.cdc.gov/als). We used log-linear capture-recapture (CRC) model-based methodology to estimate the number of cases not ascertained by the Registry. RESULTS: The Registry identified 21,655 cases of ALS in 2018, with an age-adjusted prevalence of 6.6 per 100,000 U.S. population. When CRC methods were used, an estimated 29,824 cases were identified, for an adjusted prevalence of 9.1 per 100,000 U.S. population. The demographics of cases of ALS did not change from previous year's reports. ALS continues to impact Whites, males, and persons over 50 years of age more so than other comparison groups. The results from the present report suggest case ascertainment for the Registry has improved, with the estimate of missing prevalent cases decreasing from 44% in 2017 to 27% in in 2018. DISCUSSION: Consistent with previous estimates that used CRC, ALS prevalence in the United States is about 29,824 cases per year.
目的:估算2018日历年美国肌萎缩侧索硬化症(ALS)的流行病例数。 方法:国家ALS注册中心(注册中心)从国家行政数据库(来自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)收集数据,并通过门户网站(www.cdc.gov/als)自愿提交的登记数据。我们使用基于对数线性捕获再捕获(CRC)模型的方法来估算注册中心未确定的病例数。 结果:注册中心在2018年确定了21,655例ALS病例,年龄调整后的患病率为每10万美国人口6.6例。当使用CRC方法时,确定了约29,824例病例,调整后的患病率为每10万美国人口9.1例。ALS病例的人口统计学特征与上一年度报告相比没有变化。与其他对照组相比,ALS对白人、男性和50岁以上人群的影响仍然更大。本报告结果表明,注册中心的病例确诊情况有所改善,未确诊的流行病例估计数从2017年的44%降至2018年的27%。 讨论:与之前使用CRC的估计一致,美国ALS的患病率约为每年29,824例。
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