Ghosh Manosij, Broothaerts Katrijn, Ronsmans Steven, Roig Ingrid Barcena, Scheepers Jef, Dikmen Mustafa, Ciscato Emily Rose, Blanch Carolina, Plusquin Michelle, Nygaard Unni C, Sejbæk Camilla Sandal, Hougaard Karin S, Hoet Peter Hm
Centre for Environment and Health, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Centre for Environment and Health, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Environ Res. 2023 Nov 15;237(Pt 1):116886. doi: 10.1016/j.envres.2023.116886. Epub 2023 Aug 18.
Within collaborative projects, such as the EU-funded Horizon 2020 EXIMIOUS project (Mapping Exposure-Induced Immune Effects: Connecting the Exposome and the Immunome), collection and analysis of large volumes of data pose challenges in the domain of data management, with regards to both ethical and legal aspects. However, researchers often lack the right tools and/or accurate understanding of the ethical/legal framework to independently address such challenges. With the guidance and support within and between the partner institutes (the researchers and the ethical and legal teams) in the EXIMIOUS project, we have been able to understand and solve most challenges during the first two project years. This has fed into the development of a Data Management Plan and the establishment of data management platforms in accordance with the ethical and legal framework laid down by the EU and the different national regulations of the partners involved. Through this elaborate exercise, we have acquired tools which allow us to make our research data FAIR (Findable, Accessible, Interoperable, and Reusable), while at the same time ensuring data privacy and security (GDPR compliant). Herein we share our experience of creating and managing the data workflow through an open research communication, with the aim of helping other researchers build their data management framework in their own projects. Based on the measures adopted in EXIMIOUS to ensure FAIR data management, we also put together a checklist "DMP CHECK" containing a series of recommendations based on our experience.
在诸如欧盟资助的“卓越2020”项目（绘制暴露诱导的免疫效应：连接暴露组和免疫组）等合作项目中，大量数据的收集和分析在数据管理领域带来了伦理和法律方面的挑战。然而，研究人员往往缺乏正确的工具和/或对伦理/法律框架的准确理解，无法独立应对这些挑战。在“卓越2020”项目中合作伙伴机构内部及之间（研究人员以及伦理和法律团队）的指导和支持下，我们得以在项目的前两年理解并解决了大部分挑战。这促进了数据管理计划的制定以及符合欧盟制定的伦理和法律框架以及相关合作伙伴不同国家法规的数据管理平台的建立。通过这一精心的实践，我们获得了使研究数据具备FAIR（可查找、可访问、可互操作和可重用）特性的工具，同时确保了数据隐私和安全（符合通用数据保护条例）。在此，我们通过开放的研究交流分享创建和管理数据工作流程的经验，旨在帮助其他研究人员在他们自己的项目中构建数据管理框架。基于“卓越2020”项目中为确保公平数据管理而采取的措施，我们还整理了一份“数据管理计划检查清单（DMP CHECK）”，其中包含基于我们经验的一系列建议。
