Department of Molecular Oncology, BC Cancer Research Centre, 675 West 10th Avenue, Vancouver, BC, V5Z 1L3, Canada.
BC Children's Hospital Research Institute, 938 West 28th Avenue, Vancouver, BC, V5Z 4H4, Canada.
J Transl Med. 2021 Dec 4;19(1):493. doi: 10.1186/s12967-021-03147-z.
To drive translational medicine, modern day biobanks need to integrate with other sources of data (clinical, genomics) to support novel data-intensive research. Currently, vast amounts of research and clinical data remain in silos, held and managed by individual researchers, operating under different standards and governance structures; a framework that impedes sharing and effective use of data. In this article, we describe the journey of British Columbia's Gynecological Cancer Research Program (OVCARE) in moving a traditional tumour biobank, outcomes unit, and a collection of data silos, into an integrated data commons to support data standardization and resource sharing under collaborative governance, as a means of providing the gynecologic cancer research community in British Columbia access to tissue samples and associated clinical and molecular data from thousands of patients.
Through several engagements with stakeholders from various research institutions within our research community, we identified priorities and assessed infrastructure needs required to optimize and support data collections, storage and sharing, under three main research domains: (1) biospecimen collections, (2) molecular and genomics data, and (3) clinical data. We further built a governance model and a resource portal to implement protocols and standard operating procedures for seamless collections, management and governance of interoperable data, making genomic, and clinical data available to the broader research community.
Proper infrastructures for data collection, sharing and governance is a translational research imperative. We have consolidated our data holdings into a data commons, along with standardized operating procedures to meet research and ethics requirements of the gynecologic cancer community in British Columbia. The developed infrastructure brings together, diverse data, computing frameworks, as well as tools and applications for managing, analyzing, and sharing data. Our data commons bridges data access gaps and barriers to precision medicine and approaches for diagnostics, treatment and prevention of gynecological cancers, by providing access to large datasets required for data-intensive science.
为推动转化医学的发展，现代生物银行需要与其他数据源（临床、基因组学）集成，以支持新的数据密集型研究。目前，大量的研究和临床数据仍然存在于各个领域，由个体研究人员持有和管理，他们遵循不同的标准和治理结构；这种框架阻碍了数据的共享和有效利用。在本文中，我们描述了不列颠哥伦比亚妇科癌症研究计划（OVCARE）的历程，该计划将传统的肿瘤生物银行、结果单位和一系列数据孤岛整合到一个集成的数据公共设施中，以支持数据标准化和资源共享，并采用协作治理的方式，为不列颠哥伦比亚的妇科癌症研究界提供数千名患者的组织样本以及相关的临床和分子数据。
通过与我们研究社区内各研究机构的利益相关者进行多次接触，我们确定了优先事项，并评估了优化和支持数据收集、存储和共享所需的基础设施需求，主要涉及三个研究领域：（1）生物样本收集，（2）分子和基因组数据，以及（3）临床数据。我们进一步构建了一个治理模型和资源门户，以实施协议和标准操作程序，实现可互操作数据的无缝收集、管理和治理，使基因组和临床数据能够为更广泛的研究社区所利用。
适当的数据收集、共享和治理基础设施是转化研究的当务之急。我们已经将数据保存到一个数据公共设施中，并制定了标准化的操作程序，以满足不列颠哥伦比亚妇科癌症社区的研究和伦理要求。所开发的基础设施汇集了多样化的数据、计算框架以及用于管理、分析和共享数据的工具和应用程序。我们的数据公共设施弥合了数据访问差距和障碍，为精准医学以及诊断、治疗和预防妇科癌症的方法提供了支持，为数据密集型科学提供了所需的大型数据集。
