印度状细胞病名册用于监测和患者管理:开发和实施
Bontha V Babu1, Yogita Sharma2, Shaily B Surti3
1Division of Socio-Behavioural & Health Systems Research, Indian Council of Medical Research, New Delhi, India.
概括
印度 印度 印度
科学领域:
- 公共卫生 公共卫生
- 遗传学 是一个遗传学.
- 医疗信息学 医疗信息学
背景情况:
- 状细胞疾病 (SCD) 不成比例地影响着印度的部落人口.
- 在这些社区,有限的查和诊断阻碍了有效的SCD管理.
- 包括注册表在内的综合护理模式对于解决印度的SCD至关重要.
研究的目的:
- 描述印度SCD注册表 (ISCDR) 的开发和实施.
- 为部落地区的SCD患者建立一个系统的数据收集系统.
- 评估一个国家SCD注册表的可行性,用于计划规划和管理.
主要方法:
- 开发了一个由两个组件组成的ISCDR:一个Android手机/平板电脑应用程序和一个仪表板/管理板.
- 使用电子案例报告表格 (CRF-1和CRF-2) 来获取数据.
- 在实施过程中解决了数据质量,安全和共享方面的问题.
主要成果:
- 在六个部落占主导地位的地区成功实施了ISCDR.
- 在12个月内收集了324名SCD患者和1771名携带者的数据.
- 证明了对SCD系统纵向数据收集的可行性.
结论:
- 印度SCD注册表 (ISCDR) 是管理SCD数据的可行和有效工具.
- 该注册表为计划规划和管理提供了必要的纵向数据.
- 该ISCDR系统具有可扩展性,可以与其他健康数据库集成.
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