使用的共同条件元素. 关于信息治理的一致性和有效性的原子概念
Maria Del Carmen Sanchez Gonzalez1, Pim Kamerling2, Mariapia Iermito3
1Institute for Rare Diseases Research (IIER), Instituto de Salud Carlos III, Av. Monforte de Lemos, 5 PC, 28029, Madrid, Spain. mcsanchez@isciii.es.
Scientific data
|May 8, 2024
概括
研究人员开发了一个标准化的词汇,使用元素的常见条件,以数字化表示多样化的词汇.
科学领域:
- 生物银行和数据管理数据管理
- 罕见疾病研究研究 罕见疾病研究
- 生物资源共享的政策和伦理
背景情况:
- 分享生物资源涉及复杂的政策,伦理和法律考虑.
- 现有的表示"使用条件"的方法缺乏标准化和灵活性.
- 需要一个通用数字标准来管理生物样本和数据的各种访问和使用条款.
研究的目的:
- 为生物资源创建一个原子,非定向的"使用概念"的核心词汇.
- 为各种使用条件开发标准化和灵活的数字表示.
- 支持欧洲罕见病联合计划,提供具有通用词典的生物库和注册表.
主要方法:
- 从现实世界生物银行和注册表设置中确定了76个初始概念.
- 利用代审议和用户测试来改进和缩小概念到20个核心元素.
- 开发了支持软件和培训,用于生物银行/注册表,以使用词典创建共享政策档案.
主要成果:
- 成功地将76个概念凝聚在一个由20个常用条件元素组成的核心词典中.
- 生物银行和注册表通过添加标准化的方向性和范围注释,有效地创建了共享政策档案.
- 探索了自由文本参数的实用性,以提高政策配置文件的灵活性.
结论:
- 共同使用条件元素提供了一种标准化和灵活的方法来表示生物资源使用条件.
- 这种标准化词汇促进了更好的数字管理和生物资源的共享.
- 该方法正在现实世界项目中采用,为管理使用条件的通用标准铺平了道路.
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