儿科癌症数据共享库:联合并普及儿童癌症研究数据。

Pediatric Cancer Data Commons: Federating and Democratizing Data for Childhood Cancer Research.

作者信息

Plana Alejandro, Furner Brian, Palese Monica, Dussault Nicole, Birz Suzi, Graglia Luca, Kush Maura, Nicholson James, Hecker-Nolting Stefanie, Gaspar Nathalie, Rasche Mareike, Bisogno Gianni, Reinhardt Dirk, Zwaan C Michel, Koscielniak Ewa, Frazier A Lindsay, Janeway Katherine, S Hawkins Douglas, Kolb E Anders, Cohn Susan L, Pearson Andrew D J, Volchenboum Samuel L

机构信息

Department of Pediatrics, University of Chicago, Chicago, IL.

Center for Research Informatics, University of Chicago, Chicago, IL.

出版信息

JCO Clin Cancer Inform. 2021 Sep;5:1034-1043. doi: 10.1200/CCI.21.00075.

Abstract

The international pediatric oncology community has a long history of research collaboration. In the United States, the 2019 launch of the Children's Cancer Data Initiative puts the focus on developing a rich and robust data ecosystem for pediatric oncology. In this spirit, we present here our experience in constructing the Pediatric Cancer Data Commons (PCDC) to highlight the significance of this effort in fighting pediatric cancer and improving outcomes and to provide essential information to those creating resources in other disease areas. The University of Chicago's PCDC team has worked with the international research community since 2015 to build data commons for children's cancers. We identified six critical features of successful data commons design and implementation: (1) establish the need for a data commons, (2) develop and deploy the technical infrastructure, (3) establish and implement governance, (4) make the data commons platform easy and intuitive for researchers, (5) socialize the data commons and create working knowledge and expertise in the research community, and (6) plan for longevity and sustainability. Data commons are critical to conducting research on large patient cohorts that will ultimately lead to improved outcomes for children with cancer. There is value in connecting high-quality clinical and phenotype data to external sources of data such as genomic, proteomics, and imaging data. Next steps for the PCDC include creating an informed and invested data-sharing culture, developing sustainable methods of data collection and sharing, standardizing genetic biomarker reporting, incorporating radiologic and molecular analysis data, and building models for electronic patient consent. The methods and processes described here can be extended to any clinical area and provide a blueprint for others wishing to develop similar resources.

摘要

国际儿科肿瘤学界有着悠久的研究合作历史。在美国,2019年启动的儿童癌症数据倡议将重点放在为儿科肿瘤学建立一个丰富而强大的数据生态系统上。本着这种精神,我们在此介绍我们构建儿科癌症数据共享库(PCDC)的经验,以突出这项工作在抗击儿童癌症和改善治疗结果方面的重要性,并为其他疾病领域创建资源的人员提供基本信息。芝加哥大学的PCDC团队自2015年以来一直与国际研究界合作,为儿童癌症建立数据共享库。我们确定了成功设计和实施数据共享库的六个关键特征:(1)确定对数据共享库的需求,(2)开发和部署技术基础设施,(3)建立和实施治理,(4)使数据共享库平台对研究人员来说简单直观,(5)推广数据共享库并在研究社区中创造实用知识和专业技能,以及(6)规划长期发展和可持续性。数据共享库对于对大量患者队列进行研究至关重要,这最终将改善癌症患儿的治疗结果。将高质量的临床和表型数据与基因组、蛋白质组学和成像数据等外部数据源相连接具有重要意义。PCDC的下一步计划包括营造一种明智且积极参与的数据共享文化,开发可持续的数据收集和共享方法,规范遗传生物标志物报告,纳入放射学和分子分析数据,以及建立电子患者同意模型。这里描述的方法和流程可以扩展到任何临床领域,并为其他希望开发类似资源的人提供蓝图。

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