TY - JOUR AU - Glicksberg, Benjamin Scott AU - Burns, Shohei AU - Currie, Rob AU - Griffin, Ann AU - Wang, Zhen Jane AU - Haussler, David AU - Goldstein, Theodore AU - Collisson, Eric PY - 2020 DA - 2020/3/20 TI -区块链认证的癌症患者基因组和临床结果数据共享:数据共享KW -电子健康记录KW -基因组学KW -医学KW -区块链KW -肿瘤AB -背景:有效共享标准护理期间产生的健康数据可以极大地加速癌症治疗的进展，但各种障碍使这一过程变得困难。不分享这些数据以确保患者隐私的代价是很少甚至没有从癌症治疗期间产生的真实数据中学习。此外，最近的研究表明，癌症患者愿意分享他们的治疗经验，以促进研究，尽管有潜在的隐私风险。目的:本研究的目的是设计、试验和发布一种分散、可扩展、高效、经济和安全的策略，用于传播去识别的临床和基因组数据，重点是晚期癌症。方法:我们创建并试行了一个区块链认证系统，以实现来自标准护理成像、基因组测试和电子健康记录(EHRs)的未识别患者数据的安全共享，该系统称为癌症基因信托(CGT)。我们前瞻性地同意并收集了一个试点队列(N=18)的数据，并将其上传到CGT。从医院癌症登记处和公共数据模型(CDM)格式中提取电子病历数据，以确定最佳的数据提取和传播实践。具体来说，我们对两种EHR数据提取格式与具有可用数据的患者的金标准源文档之间的完整性进行了评分和比较(n=17)。结果:虽然注册表报告的总完整性得分高于CDM报告，但这种差异没有统计学意义。 We did find that some specific data fields, such as histology site, were better captured using the registry reports, which can be used to improve the continually adapting CDM. In terms of the overall pilot study, we found that CGT enables rapid integration of real-world data of patients with cancer in a more clinically useful time frame. We also developed an open-source Web application to allow users to seamlessly search, browse, explore, and download CGT data. Conclusions: Our pilot demonstrates the willingness of patients with cancer to participate in data sharing and how blockchain-enabled structures can maintain relationships between individual data elements while preserving patient privacy, empowering findings by third-party researchers and clinicians. We demonstrate the feasibility of CGT as a framework to share health data trapped in silos to further cancer research. Further studies to optimize data representation, stream, and integrity are required. SN - 1438-8871 UR - //www.mybigtv.com/2020/3/e16810/ UR - https://doi.org/10.2196/16810 UR - http://www.ncbi.nlm.nih.gov/pubmed/32196460 DO - 10.2196/16810 ID - info:doi/10.2196/16810 ER -