Okolo Amanda I, Jacob Seethal A, Dixon Brian E, Valvi Nimish R, Janson Isaac A, Hardesty Brandon M
Indiana Hemophilia and Thrombosis Center, Inc, Indianapolis, IN, USA.
Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, Indianapolis, IN, USA.
Public Health Rep. 2024 Mar-Apr;139(2):201-207. doi: 10.1177/00333549231170229. Epub 2023 May 26.
The Indiana Sickle Cell Data Collection (IN-SCDC) program aims to provide timely, reliable, and locally relevant information on the sickle cell disease (SCD) population in Indiana to inform public health interventions, research, and policy development. We describe the development of the IN-SCDC program and report the prevalence and geographic distribution of people with SCD in Indiana using an integrated data collection approach.
Using multiple integrated data sources and case definitions established by the Centers for Disease Control and Prevention, we classified cases of SCD in Indiana during 2015-2019. We calculated the prevalence and incidence of SCD and described characteristics of people with SCD.
We identified 1695 people living with SCD in Indiana during the study period. The median age of people living with SCD was 21 years, and 1474 (87.0%) were Black or African American. Most (n = 1596, 91%) resided in metropolitan counties. The age-adjusted prevalence of SCD was 24.7 cases per 100 000 people. The prevalence of SCD among Black or African American people was 209.3 per 100 000 people. The incidence was 1 in 2608 live births overall and 1 in 446 live births among Black or African American people. Eighty-six deaths were confirmed in this population during 2015-2019.
Our results establish a baseline for the IN-SCDC program. Baseline and future surveillance program efforts will help accurately inform standards of care for treatments, identify gaps in coverage and access to care, and provide guidance for legislators and community-based organizations.
印第安纳镰状细胞病数据收集（IN-SCDC）项目旨在提供有关印第安纳州镰状细胞病（SCD）人群及时、可靠且与当地相关的信息，以为公共卫生干预、研究及政策制定提供依据。我们描述了IN-SCDC项目的发展情况，并采用综合数据收集方法报告了印第安纳州SCD患者的患病率及地理分布。
利用多个综合数据源以及疾病控制与预防中心制定的病例定义，我们对2015 - 2019年印第安纳州的SCD病例进行了分类。我们计算了SCD的患病率和发病率，并描述了SCD患者的特征。
在研究期间我们确定印第安纳州有1695名SCD患者。SCD患者的中位年龄为21岁，其中1474人（87.0%）为黑人或非裔美国人。大多数（n = 1596，91%）居住在大城市县。SCD的年龄调整患病率为每10万人24.7例。黑人或非裔美国人中SCD的患病率为每10万人209.3例。总体活产儿中发病率为1/2608，黑人或非裔美国人活产儿中发病率为1/446。2015 - 2019年期间该人群确认有86例死亡。
我们的结果为IN-SCDC项目建立了基线。基线及未来的监测项目工作将有助于准确告知治疗的护理标准，识别护理覆盖和可及性方面的差距，并为立法者和社区组织提供指导。
