在精密瘤学中收集真实世界的临床基因组数据的核心变量
R Dienstmann1,2,3, A Hackshaw4, J-Y Blay5
1OC Precision Medicina, Oncoclínicas & Co, São Paulo, Brazil.
概括
定义核心精度瘤学变量对于改善现实世界数据收集和证据生成至关重要. 这种标准化的方法通过增强数据互操作性来支持分子瘤委员会决策和未来的研究.
科学领域:
- 在瘤学瘤学.
- 基因组学就是基因组学.
- 数据科学数据科学数据科学
背景情况:
- 精确瘤学依赖于现实世界的临床基因组数据,但目前的局限性阻碍了有效的数据收集和证据生成.
- 使用WAYFIND-R注册表 (NCT04529122) 方法来解决这些局限性.
研究的目的:
- 定义精确瘤学变量的核心集,用于适合目的的现实世界数据收集.
- 支持各种利益相关者和一系列数据用途.
主要方法:
- 一个由精密瘤学专家组成的小组根据标准词典和词汇库制定了初始变量列表.
- 该清单与欧洲医疗机构关于基于注册表的研究指南草案保持一致.
- 从更广泛的列表中选择了一组核心变量.
主要成果:
- 最初的大约500个变量的列表被改进到大约150个核心变量.
- 这些变量涵盖了瘤学中的整个患者旅程.
- 优先考虑的关键领域包括人口统计,社会经济因素,并发病,癌症细节,分子信息 (生物标志物,下一代测序),治疗方法和结果.
结论:
- 定义的核心瘤学变量提供了基本临床基因组数据元素的协调清单.
- 这些变量促进了分子瘤委员会决策和潜在的二次研究.
- 标准化这些核心变量将增强精确瘤学研究的协同作用,连接性和互操作性.
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