医生证书与手动数据抽象对状细胞类型的高一致性:一个ASH RC数据中心研究
Alexis A Thompson1, Ashima Singh2, Donna S Neuberg3
1Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States.
Blood advances
|January 21, 2026
概括
状细胞疾病 (SCD) 数据中心 (DH) 准确地识别了使用现实数据的SCD类型. 医生证明和图表摘要之间的高一致性 (94%) 验证了未来研究的DH.
科学领域:
- 血液学 血液学 血液学
- 数据科学数据科学数据科学
- 公共卫生 公共卫生
背景情况:
- 状细胞疾病 (SCD) 是美国普遍存在的一种遗传性血液疾病.
- 该ASH研究协作 (ASH RC) 建立了SCD数据中心 (DH) 以利用现实世界的数据进行研究和质量改进.
- 准确的患者数据对于了解SCD人口统计学和改善患者结果至关重要.
研究的目的:
- 报告从SCD数据中心 (DH) 的初始分析.
- 评估DH中SCD队列的人口统计数据.
- 评估SCD诊断类型识别在DH中的准确性.
主要方法:
- 数据使用协议促进了从20个DH站点提取EHR数据.
- 医生首席调查员 (PIs) 提供了SCD诊断的证明.
- 手动图表抽象在25名患者的随机样本上进行,以确定对应性.
- 在医生认证和手动抽象的SCD类型之间计算了对应性.
主要成果:
- DH包括23970名SCD患者的数据;中位数年龄为23岁,女性占55.4%.
- 医生认可的SCD类型包括HbSS (67.2%),HbSC (22.2%),HbSß0thalassemia (2.1%),HbSß+thalassemia (6.1%),以及HbS/其他 (2.4%).
- 在医生认证的SCD类型和手动图表抽象之间观察到高达94%的一致率.
结论:
- SCD数据中心 (DH) 证明了SCD诊断类型的高数据有效性.
- 验证的DH数据将支持观察性研究,并为干预试验设计提供信息.
- 这种真实世界的数据资源对于推进SCD研究和护理至关重要.
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