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Towards a Bavarian Oncology Real World Data Research Platform
Jasmin Ziegler1,2, Julian Gruendner3, Lorenz Rosenau4
1Medical Center for Information and Communication Technology, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU), Erlangen, Germany.
Federated real-world data networks are crucial for medical research. Adapting the Medical Informatics Initiative (MII) platform for oncology data revealed its unique complexity, informing future research infrastructure development.
Area of Science:
- Medical Informatics
- Oncology Research
- Health Data Networks
Background:
- Numerous real-world data networks leverage electronic health records for medical research.
- Germany established a nationwide network (Medical Informatics Initiative - MII) accessible via the German Portal for Medical Research Data (FDPG).
- Bavarian university hospitals formed the Bavarian Cancer Research Center (BZKF) to create a specialized oncology research network.
Purpose of the Study:
- Establish a federated observational research network for oncology within the MII/FDPG framework.
- Extend the network with a focus on oncological clinical, imaging, and molecular data.
- Perform federated feasibility queries on clinical oncology data as a primary use case.
Main Methods:
- Describe adaptations and extensions to existing MII components.
- Develop a feasibility platform prototype for oncology data.
- Present the prototype to end-users for feedback.
Main Results:
- Oncological data exhibits higher interdependence and complexity compared to the MII core dataset.
- Insights were gained from developing and presenting the feasibility platform prototype.
- User feedback highlighted specific needs for oncology research data.
Conclusions:
- Formulated requirements for extending MII components to accommodate oncology-specific data.
- Addressed the needs of oncology researchers through platform development.
- Transferred results and experiences back into the broader MII development.
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