NFDI4Health - the National Research Data Infrastructure for Personal Health Data - deals with data generated in clinical trials, epidemiological and public health studies. The collection and analysis of these data on health and disease status and important factors influencing it are an essential component for the development of new therapies, comprehensive care approaches and preventive measures in a modern health care system. Although these data already meet high content quality standards, they often do not fulfil the requirements of the FAIR principles:
- The findability of data is often limited due to the lack of international standards for registration and publication.
- Possibilities for data use by third parties are usually unclear.
- Databases are often not interoperable, e.g. due to the great methodological heterogeneity in the recording of exposures and health endpoints.
- Furthermore, privacy requirements and informed consent of study participants restrict the reuse of data.