增加印第安纳州状细胞疾病的可见性:使用来自多个来源的综合数据建立基线流行率
Amanda I Okolo1, Seethal A Jacob2,3, Brian E Dixon4,5
1Indiana Hemophilia and Thrombosis Center, Inc, Indianapolis, IN, USA.
Public health reports (Washington, D.C. : 1974)
|May 26, 2023
概括
印第安纳州状细胞数据收集计划在印第安纳州确定了1695名患有状细胞疾病 (SCD) 的个人. 这项监测工作提供了关于SCD流行和人口统计的关键数据,以改善公共卫生干预和护理标准.
科学领域:
- 公共卫生监督 公共卫生监督
- 流行病学 流行病学
- 血液学 血液学 血液学
背景情况:
- 状细胞病 (SCD) 是一种遗传性血液疾病,需要全面的公共卫生监测.
- 印第安纳状细胞数据收集 (IN-SCDC) 计划是为了满足本地化SCD数据的需求而建立的.
- 了解SCD的流行和分布对于有针对性的干预至关重要.
研究的目的:
- 描述IN-SCDC计划的发展和基线发现.
- 报告印第安纳州SCD的流行,发病率和地理分布.
- 为SCD人口提供公共卫生干预,研究和政策制定信息.
主要方法:
- 使用综合数据收集方法,结合多个来源.
- 应用疾病控制和预防中心 (CDC) 的病例定义.
- 分析了2015-2019年的数据,以确定SCD的流行,发病率和人口统计特征.
主要成果:
- 在2015-2019年间,在印第安纳州确定了1695名患有SCD的个人.
- 经年龄调整后的患病率为每10万人中24.7,在黑人或非裔美国人中显著高于100,000人中的209.3人.
- 总体而言,发生率为2608例活产中的1例,黑人或非裔美国人出生中的446例中的1例;记录有86例死亡.
结论:
- 建立了IN-SCDC计划正在进行的监测工作的基准.
- 结果将为护理标准提供信息,确定接入差距,并指导SCD管理政策.
- 强调持续收集数据的重要性,以改善SCD患者的治疗结果.
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