Shi Jingjing, Guo Yan, He Na, Xia Wenbin, Liu Hongkun, Li Haixin
Cancer Biobank, National Clinical Research Center for Cancer, Tianjin Medical University Cancer Institute & Hospital, Tianjin, China.
Key Laboratory of Molecular Cancer Epidemiology of Tianjin, National Clinical Research Center for Cancer, Tianjin Medical University Cancer Institute & Hospital, Tianjin, China.
Biopreserv Biobank. 2024 Dec 13. doi: 10.1089/bio.2024.0081.
To facilitate the regionalization, specialization, and digitization of biobanks, three issues regarding data collection and application must be addressed (1) integration and distribution of data governance, (2) efficiency and efficacy of data governance, and (3) sustainability of data governance. We collaborated with stakeholders to identify priorities and assess infrastructure needs through the continuous evaluation and analysis of projects. We developed data management solutions, catalogs, and data models to optimize and support data collection, distribution, and application. Furthermore, ontologies were used to facilitate data integration from multiple sources, and Minimum Information About BIobank Data Sharing (MIABIS) was defined as accessible to all patients. To enhance data integrity, we conducted retrospective and prospective follow-up studies. We completed infrastructure upgrades to match technical solutions and research demands. An information management software with six primary functional divisions was developed for data governance. We optimized the database structure and changed the biospecimen accumulation model from biospecimen-based to patient-centered and service-oriented. Subsequently, we specified 85 attributes of MIABIS to describe the biobank contents. A dual-pillar approach was adopted to expand the biobank's data in collaboration with other institutions, and MIABIS served as a bridge for both vertical and horizontal networks. From 2003 to 2021, we collected a total of 156,997 patient biospecimens/data from 20 cancer types, matching 53,113 cases from follow-up surveys. In addition, we supplied more than 40,000 biospecimens/data points for above 300 scientific research projects. An appropriate information platform for a biobank is fundamental to data collection, distribution, and application, particularly in the context of data-intensive research. We implemented a standardized scientific data structure to fulfill the research requirements. The sustainable development of a biobank depends on a scientific, standardized, and service-oriented data governance approach, along with the efficient utilization of emerging technologies.
为推动生物样本库的区域化、专业化和数字化，必须解决有关数据收集与应用的三个问题：（1）数据治理的整合与分配；（2）数据治理的效率与效力；（3）数据治理的可持续性。我们与利益相关者合作，通过对项目的持续评估和分析来确定优先事项并评估基础设施需求。我们开发了数据管理解决方案、目录和数据模型，以优化和支持数据收集、分配及应用。此外，本体论被用于促进多源数据整合，并且定义了生物样本库数据共享最小信息（MIABIS），供所有患者访问。为提高数据完整性，我们开展了回顾性和前瞻性随访研究。我们完成了基础设施升级，以匹配技术解决方案和研究需求。开发了一个具有六个主要功能部门的信息管理软件用于数据治理。我们优化了数据库结构，将生物样本积累模式从基于生物样本转变为以患者为中心、面向服务的模式。随后，我们指定了85个MIABIS属性来描述生物样本库的内容。我们采用双支柱方法与其他机构合作扩展生物样本库的数据，MIABIS充当了纵向和横向网络的桥梁。2003年至2021年，我们共收集了来自20种癌症类型的156,997份患者生物样本/数据，与随访调查中的5,3113例病例相匹配。此外，我们为300多个科研项目提供了40,000多个生物样本/数据点。一个适合生物样本库的信息平台对于数据收集、分配和应用至关重要，尤其是在数据密集型研究的背景下。我们实施了标准化的科学数据结构以满足研究要求。生物样本库的可持续发展依赖于科学、标准化且面向服务的数据治理方法，以及对新兴技术 的有效利用。
