Abstract:
Objective: Biobanks play a crucial role in fundamental and translational research by storing valuable biomaterials and data for future analyses. However, the design of their information technology (IT) infrastructures is often customized to specific requirements, thereby lacking the ability to be used for biobanks comprising other (types of) diseases. This results in substantial costs, time, and efforts for each new biobank project. The Dutch multicenter Archipelago of Ovarian Cancer Research (AOCR) biobank has developed an innovative, reusable IT infrastructure capable of adaptation to various biobanks, thereby enabling cost-effective and efficient implementation and management of biobank IT systems. Methods and Results: The AOCR IT infrastructure incorporates preexisting biobank software, mainly managed by Health-RI. The web-based registration tool Ldot is used for secure storage and pseudonymization of patient data. Clinicopathological data are retrieved from the Netherlands Cancer Registry and the Dutch nationwide pathology databank (Palga), both established repositories, reducing administrative workload and ensuring high data quality. Metadata of collected biomaterials are stored in the OpenSpecimen system. For digital pathology research, a hematoxylin and eosin-stained slide from each patient\'s tumor is digitized and uploaded to Slide Score. Furthermore, adhering to the Findable, Accessible, Interoperable, and Reusable (FAIR) principles, genomic data derived from the AOCR samples are stored in cBioPortal. Conclusion: The IT infrastructure of the AOCR biobank represents a new standard for biobanks, offering flexibility to handle diverse diseases and types of biomaterials. This infrastructure bypasses the need for disease-specific, custom-built software, thereby being cost- and time-effective while ensuring data quality and legislative compliance. The adaptability of this infrastructure highlights its potential to serve as a blueprint for the development of IT infrastructures in both new and existing biobanks.
摘要:
目标:生物库通过存储有价值的生物材料和数据以供将来分析,在基础和转化研究中发挥着至关重要的作用。然而,他们的信息技术(IT)基础设施的设计通常是根据具体要求定制的,从而缺乏用于包含其他(类型)疾病的生物库的能力。这导致了巨大的成本,时间,以及每个新生物库项目的努力。荷兰多中心卵巢癌研究群岛(AOCR)生物库开发了一种创新,可重复使用的IT基础设施,能够适应各种生物库,从而实现经济高效的生物库IT系统的实施和管理。方法和结果:AOCRIT基础设施结合了现有的生物库软件,主要由Health-RI管理。基于网络的注册工具Ldot用于患者数据的安全存储和假名化。从荷兰癌症登记处和荷兰全国病理学数据库(Palga)检索临床病理数据,都建立了存储库,减少管理工作量并确保高数据质量。收集的生物材料的元数据存储在OpenSpecimen系统中。对于数字病理学研究,将每位患者肿瘤的苏木精和伊红染色载玻片数字化并上传到载玻片评分。此外,坚持Findable,可访问,互操作,和可重用(FAIR)原则,来自AOCR样品的基因组数据存储在cBioPortal中。结论:AOCR生物库的IT基础设施代表了生物库的新标准,提供灵活性来处理不同的疾病和类型的生物材料。这种基础设施绕过了对特定疾病的需求,定制软件,从而具有成本效益和时间效益,同时确保数据质量和立法合规性。此基础架构的适应性凸显了其作为新的和现有的生物库中IT基础架构开发蓝图的潜力。