迈向巴伐利亚肿瘤真实世界数据研究平台。

Q3 Health Professions Studies in Health Technology and Informatics Pub Date : 2023-09-12 DOI:10.3233/SHTI230696
Jasmin Ziegler, Julian Gruendner, Lorenz Rosenau, Marcel Erpenbeck, Hans-Ulrich Prokosch, Noemi Deppenwiese
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引用次数: 0

摘要

导论:在过去的十年中,为了利用电子健康记录的数据价值进行医学研究,已经建立了许多现实世界的数据网络。在德国,在医学信息学倡议(MII)范围内建立了一个基于德国所有大学医院电子健康记录数据的全国性网络,并于最近通过德国医学研究数据门户(FDPG)向研究人员开放。在巴伐利亚,六所大学医院在巴伐利亚癌症研究中心(BZKF)内联合起来。肿瘤部门的目标是建立一个基于MII/FDPG框架的联合观察研究网络,并将其扩展为明确关注肿瘤临床数据,成像数据和分子高通量分析数据。方法:我们描述了现有MII组件的必要调整和扩展,目标是建立一个巴伐利亚肿瘤学真实世界数据研究平台,其第一个用例是对临床肿瘤学数据执行联合可行性查询。结果:我们分享了开发可行性平台原型并将其呈现给最终用户的见解。我们的主要发现是,与已经集成到FDPG中的MII核心数据集相比,肿瘤学数据具有更高程度的相互依赖性和复杂性。讨论:我们工作的意义在于我们制定了扩展现有的MII组件以匹配肿瘤特定数据和满足肿瘤研究人员需求的要求,同时将我们的结果和经验转移到MII的进一步发展中。
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Towards a Bavarian Oncology Real World Data Research Platform.

Introduction: In the last decade numerous real-world data networks have been established in order to leverage the value of data from electronic health records for medical research. In Germany, a nation-wide network based on electronic health record data from all German university hospitals has been established within the Medical Informatics Initiative (MII) and recently opened for researcherst' access through the German Portal for Medical Research Data (FDPG). In Bavaria, the six university hospitals have joined forces within the Bavarian Cancer Research Center (BZKF). The oncology departments aim at establishing a federated observational research network based on the framework of the MII/FDPG and extending it with a clear focus on oncological clinical data, imaging data and molecular high throughput analysis data.

Methods: We describe necessary adaptions and extensions of existing MII components with the goal of establishing a Bavarian oncology real world data research platform with its first use case of performing federated feasibility queries on clinical oncology data.

Results: We share insights from developing a feasibility platform prototype and presenting it to end users. Our main discovery was that oncological data is characterized by a higher degree of interdependence and complexity compared to the MII core dataset that is already integrated into the FDPG.

Discussion: The significance of our work lies in the requirements we formulated for extending already existing MII components to match oncology specific data and to meet oncology researchers needs while simultaneously transferring back our results and experiences into further developments within the MII.

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来源期刊
Studies in Health Technology and Informatics
Studies in Health Technology and Informatics Health Professions-Health Information Management
CiteScore
1.20
自引率
0.00%
发文量
1463
期刊介绍: This book series was started in 1990 to promote research conducted under the auspices of the EC programmes’ Advanced Informatics in Medicine (AIM) and Biomedical and Health Research (BHR) bioengineering branch. A driving aspect of international health informatics is that telecommunication technology, rehabilitative technology, intelligent home technology and many other components are moving together and form one integrated world of information and communication media.
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