University of Aveiro, DETI/IEETA, Portugal.
BMD Software, Aveiro, Portugal.
Int J Med Inform. 2019 Jun;126:35-45. doi: 10.1016/j.ijmedinf.2019.02.006. Epub 2019 Mar 13.
The collaboration and knowledge exchange between researchers are often hindered by the nonexistence of accurate information about which databases may support research studies. Even though a considerable amount of patient health information does exist, it is usually distributed and hidden in many institutions. The goal of this project is to provide, for any research community, a holistic view of biomedical datasets of interests, from which researchers can explore several distinct levels of granularity.
We developed a community-centered approach to facilitate data sharing while ensuring privacy. A dynamic schema allows exposing any metadata model about existing repositories. The framework was developed following a modular plugin-based architecture that facilitates the integration of internal and external tools.
The EMIF Catalogue, a web platform for sharing and reusing biomedical data. Through this system, data custodians can publish and share different levels of information, while the researchers can search for databases that fulfill research requirements.
The EMIF Catalogue currently fosters several distinct research communities, with different levels of data governance, combining, for instance, data available in pan-European EHR and Alzheimer cohorts. This portal is publicly available at https://emif-catalogue.eu.
研究人员之间的合作和知识交流常常受到缺乏关于哪些数据库可能支持研究的准确信息的阻碍。尽管存在大量的患者健康信息，但这些信息通常分布在许多机构中，难以获取。本项目的目标是为任何研究团体提供感兴趣的生物医学数据集的整体视图，研究人员可以从中探索不同层次的粒度。
我们开发了一种以社区为中心的方法，以促进数据共享，同时确保隐私。动态模式允许公开关于现有存储库的任何元数据模型。该框架采用了模块化插件架构，便于集成内部和外部工具。
EMIF 目录，一个用于共享和重用生物医学数据的网络平台。通过该系统，数据保管人可以发布和共享不同层次的信息，而研究人员可以搜索满足研究需求的数据库。
EMIF 目录目前促进了几个不同的研究团体，具有不同的数据治理级别，例如结合了欧洲范围内的电子健康记录和阿尔茨海默病队列中的数据。该门户可在 https://emif-catalogue.eu 上公开获取。
