■镰状细胞病(SCD)是一种严重的遗传性贫血,在非洲五岁以下儿童死亡率中占50%至80%。坦桑尼亚每年有一万一千婴儿患有SCD,在尼日利亚之后排名第四,刚果民主共和国和印度。缺乏良好描述的SCD队列是非洲SCD健康研究的主要障碍。
■本文介绍了坦桑尼亚的镰刀泛非联盟(SPARCO)数据库,从发展来看,研究仪器的设计,数据收集,数据分析和数据质量问题的管理。
■SPARCO注册中心使用现有的Muhimbili镰状细胞队列(MSC)研究案例报告表(CRF),后来协调了SickleInAfrica联盟的数据元素,以开发研究电子数据捕获(REDCap)工具。通过各种策略招募患者,包括每年6月世界镰状细胞日和9月SCD宣传月期间媒体宣传和健康教育活动后的大规模筛查。通过主动监测MSC中先前参与的患者来鉴定另外的患者。
■在2017年10月至2021年5月之间招募了三千八百名患者。其中,男性1,946(51.21%),女性1,864(48.79%)。血红蛋白表型分布为3,762(99%)HbSS,3(0.08%)HbSC和35(0.92%)HbSb+地中海贫血。血红蛋白水平,入院史,在2017年12月至2021年5月期间,我们记录了输血和疼痛事件.
■坦桑尼亚SPARCO注册中心将通过促进SCD的协作数据驱动研究来改善非洲SCD的医疗保健。
UNASSIGNED: Sickle cell disease (SCD) is a severe hereditary form of anemia that contributes between 50% and 80% of under-five mortality in Africa. Eleven thousand babies are born with SCD annually in Tanzania, ranking 4th after Nigeria, the Democratic Republic of Congo and India. The absence of well-described SCD cohorts is a major barrier to health research in SCD in Africa.
UNASSIGNED: This paper describes the Sickle Pan African Consortium (SPARCO) database in Tanzania, from the development, design of the study instruments, data collection, analysis of data and management of data quality issues.
UNASSIGNED: The SPARCO registry used existing Muhimbili Sickle Cell Cohort (MSC) study case report forms (CRF) and later harmonized data elements from the SickleInAfrica consortium to develop Research Electronic Data Capture (REDCap) instruments. Patients were enrolled through various strategies, including mass screening following media sensitization and health education events during World Sickle Cell Day each June and the SCD awareness month in September. Additional patients were identified through active surveillance of previously participating patients in the MSC.
UNASSIGNED: Three thousand eight hundred patients were enrolled between October 2017 and May 2021. Of these, 1,946 (51.21%) were males and 1,864 (48.79%) were females. The hemoglobin phenotype distribution was 3,762 (99%) HbSS, 3 (0.08%) HbSC and 35 (0.92%) HbSb +thalassemia. Hemoglobin levels, admission history, blood transfusion and painful events were recorded from December 2017 to May 2021.
UNASSIGNED: The Tanzania SPARCO registry will improve healthcare for SCD in Africa through the facilitation of collaborative data-driven research for SCD.