German Portal for Medical Research Data (FDPG)

German Portal for Medical Research Data (FDPG) - Expansion of the portal of the Medical Informatics Initiative into a central application for clinical, epidemiological, and public health studies.

With the German Portal for Medical Research Data (FDPG), NFDI4Health is further developing the central online portal of the Medical Informatics Initiative (MII) for clinical, epidemiological, and public health studies. The portal is aimed at researchers who want to conduct projects using already collected personal health data. The goal is to make research data from various data-holding organizations, such as universities and research institutes, accessible and re-usable for new research questions in compliance with data protection regulations.

Currently, there is no uniform regulation in Germany for the application process for the secondary use of personally identifiable health data. While there are already opportunities at various locations to request data for re-use, these procedures are not coordinated, and the portals are not interconnected. Thus, researchers have to individually request research data from the respective data-holding organizations, making the process time-consuming and complex.

NFDI4Health aims to simplify this process with the further development of the German Research Data Portal Health (FDPG) and significantly ease the reuse of health data for new research questions. The FDPG was launched by the Medical Informatics Initiative (MII) in September 2022 and has been in pilot operation for all researchers since mid-May 2023. The data request process and the associated data infrastructure are currently being tested based on initial usage projects

The application process

1. German Central Health Study Hub

Researchers get an overview of available studies and data sets using the NFDI4Health German Central Health Study Hub (findability).

2. Feasibility inquiry

3. Unified data request process

4. Unified contractual arrangements for data re-use

5. Coordination of data provision

6. Transparent presentation of conducted research projects

NFDI4Health conducts workshops to evaluate opportunities, risks, and limitations. With these workshops we built a community of relevant stakeholders who regularly engage in discussions to advance the goal of a central application portal.

Our Workshops on the Central Access Point (in German)

Workshop „Zugang zu föderiert organisierten Forschungsdaten“

Workshop „Antragsformulare für den Zugang zu Forschungsdaten“

Our Services

Health Study Hub

The German Central Health Study Hub allows researchers to publish their project characteristics, documents and data related to their research project in a FAIR manner or to find information about past and ongoing studies.

Data Train

The Data Train cross-disciplinary graduate training programme, a core element of the NFDI4Health training approach, aims at building the next generation of data-savvy researchers in the biomedical sciences.

Personal Health Train

To foster data-driven innovation in medicine, we developed a distributed analysis infrastructure that enables research on sensitive data without prior data sharing while supporting diverse data formats.

Local Data Hub

The LDH is the local node in the federated concept of NFDI4Health. We develop and promote the dissemination of a unified data sharing platform based on the FAIR principles in line with the NFDI4Health standards.

Data publication

Health data, as collected in clinical trials and epidemiological, as well as public health studies, cannot be freely published, but are valuable datasets whose reuse is of high importance for health research. NFDI4Health has established a metadata standard and process for the publication of health studies to make health data FAIR.

Data harmonisation

To make health studies and their data FAIR we have developed guidelines and standards for metadata description and data sharing. We have developed data publication guidelines, common metadata description standards and adaptations of health data interoperability standards to harmonize the description of studies and their corresponding metadata.

Data Quality Assessment

It is a paradox: on the one hand, good scientific work depends on high data quality. On the other hand, a lot of effort is put into the design and conduct of studies, but not into data quality assessments. We help to facilitate the efficient performance of such assessments with versatile concepts and tools

DataSHIELD

Expansion of decentralised research projects with DataSHIELD: Until now, data protection concerns and the lack of special IT infrastructure have prevented the expansion of cross-institutional research projects. DataSHIELD is intended to solve that problem.