Objectives and methodology:
As part of the new central project (Module 2b) of the BMBF-funded MII, FDPG plus (Extension of the the German Portal for Medical Research Data, FDPG for short), the work already begun in the projects NUM-RDP (Network of University Medicine - Routine Data Platform) and MII ABIDE_MI (Aligning Biobanking and DIC Efficiently) is to be continued. The focus is on the further development of this national portal through functional enhancements, which are necessary in the third MII funding period, as well as through improvements based on continuous user feedback and usability analyses. The project acts as a central link between the MII and the medical research community as well as the public, especially patients.
Prof Dr Hans-Ulrich Prokosch: "We are delighted that the publication* on the architecture of the FDPG feasibility portal in conjunction with all middleware components and the DIC servers was recognised in the Yearbook of Medical Informatics 2023 as one of the four best publications of 2022 in the field of Clinical Research Informatics. That motivates us to design further improvements on this successful path and thus contribute to the progress of the MII."
*Gruendner J, Deppenwiese N, Folz M, Köhler T. Kroll B, Prokosch HU, et al. The Architecture of a Feasibility Query Portal for Distributed COVID-19 Fast Healthcare Interoperability Resources (FHIR) Patient Data Repositories: Design and Implementation Study. JMIR Med Inform 2022 May 25;10(5):e36709. doi: 10.2196/36709.
As part of a typical data usage and data exchange project, the FDPG plus project will support the following activities of medical researchers:
- Provide general information about the FDPG and the data provided by the MII network of all German Data Integration Centres (DIC) (FDPG website; without user authentication) and explain the processes for requesting data and biosamples,
- perform feasibility queries to determine the potential size of patient cohorts that the MII-DIC can provide for a planned project and that match the relevant patient characteristics as selection criteria (FDPG feasibility portal; with user authentication), and
- entering and submitting an application for a data use project and managing the status of this project application over time, from review to the signing of data usage agreements to the achievement of project results, which are published and publicly documented in the transparency register for data use projects on the FDPG website. After signing the data usage agreement, the participating DIC will use a patient data extraction component to extract and provide their local data. The data will then be transferred to the data manager of the data use project via the MII data sharing framework (see Module 2b, DSF Community and TRANSIT).
Partners:
The "FDPG plus" software component is being developed by seven partners who have already worked together successfully in the predecessor projects CODEX and ABIDE_MI. The University of Erlangen-Nuremberg is coordinating the project. The "FDPG plus" project team works closely with other MII Module 2 projects, in particular DSF (Data Sharing Framework Community), SU-TermServ (Service Unit 'Terminological Services') and TRANSIT as well as the MII Coordination Office, to ensure complete data sharing processes in accordance with MII standards.
Contact person:
Professor Hans-Ulrich Prokosch
Project Coordination
FAU Erlangen- Nürnberg
Faculty of Medicine
Institute of Medical Informatics, Biometry, and Epidemiology
Chair of Medical Informatics
Krankenhausstr. 12
91054 Erlangen
Phone: +49 913 1852 6720