状细胞疾病监测的共同数据模型:考虑和影响
Matthew P Smeltzer1, Sarah L Reeves2, William O Cooper3,4
1Division of Epidemiology, Biostatistics, and Environmental Health School of Public Health, University of Memphis, Memphis, Tennessee, USA.
JAMIA open
|May 30, 2023
概括
疾病控制和预防中心 (CDC) 建立了一个试点状细胞数据收集 (SCDC) 信息基础设施. 这使得各州的数据收集标准化,改善了对这种罕见疾病的监测.
科学领域:
- 公共卫生监督 公共卫生监督
- 医疗信息学 医疗信息学
- 罕见疾病研究 罕见疾病研究
背景情况:
- 美国关于状细胞疾病 (SCD) 的人口级数据有限.
- 疾病控制和预防中心 (CDC) 启动了州级状细胞数据收集计划 (SCDC),以解决这一差距.
- 各国数据收集流程的标准化对于有效的SCD监控至关重要.
研究的目的:
- 描述建立和维护用于SCD监控的共同信息基础设施.
- 确定SCD公共卫生报告所必需的关键数据元素.
- 开发一种标准化的方法来收集罕见疾病数据.
主要方法:
- 为SCDC计划开发一个试点共同的信息基础设施.
- 实施一个共同的数据模型,在各参与国之间标准化数据.
- 确定用于公共卫生报告的关键数据元素.
主要成果:
- 一个共同信息基础设施的试点项目成功实施.
- 该基础设施允许在各州汇集数据进行比较分析.
- 年度核心监测数据报告是使用各州向CDC提交的汇总数据编制的.
结论:
- 试点SCDC共同的信息基础设施加强了分布式数据网络.
- 该倡议为其他罕见疾病的类似数据收集和监测工作提供了蓝图.
- 标准化的信息基础设施是加强罕见疾病监测和研究的关键.
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