关于罕见疾病的最低数据集:系统审查
Filipe Andrade Bernardi1,2, Bibiana Mello de Oliveira2,3,4, Diego Bettiol Yamada1,2
1Health Intelligence Laboratory, Ribeirao Preto Medical School, University of Sao Paulo, Ribeirão Preto, Brazil.
Journal of medical Internet research
|July 27, 2023
概括
这项研究解决了对罕见疾病 (RD) 标准化最低数据集 (MDS) 的挑战. 它提出了一个基本的全球MDS,以改善罕见疾病的临床数据收集和研究.
科学领域:
- 医疗信息学 医疗信息学
- 罕见疾病研究 罕见疾病研究
- 数据标准化数据标准化
背景情况:
- 最小数据集 (MDS) 对健康监测和研究至关重要,但罕见疾病 (RD) 数据的复杂性阻碍了指标生成.
- 现有的文献揭示了在收集,记录和结构化研发和开发数据方面面临的全球挑战.
- 标准化的MDS对于有效的健康监测和生成人口指标至关重要.
结论:
- 由于研究结构的多样化,对RD MDS发现进行标准化和分类是具有挑战性的.
- 一个基本的 RDs 全球 MDS 已被设计,解决临床和管理数据需求.
- 这个MDS可以为罕见疾病的公共政策和战略决策提供信息.
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