The German Central Health Study Hub (Health Study Hub for short) is a platform to find and publish clinical, epidemiological and public health research data.
Finding data from health research
The Health Study Hub aims to provide a holistic overview of the German health research landscape. To this end, health data from public repositories such as German Clinical Trials Register (DRKS), ClinicalTrials.gov, or WHO International Clinical Trials Registry Platform (WHO ICTRP) are aggregated and harmonized. In addition, scientists and data holding organizations (DHOs) provide descriptive metadata on their studies, study associated documents, data, data collections or registers.
The inventory of metadata on clinical, public health and epidemiological research data facilitates the findability of past and ongoing studies, survey instruments, study documents, health registers, administrative databases and relevant access rights.
Furthermore, the platform enables the search and comparison of variable catalogues and more than 12,900 variables collected in questionnaires and data sets. This increases the potential for cross-study data analyses and provides the basis for harmonization.
Publishing data from health research
Scientists and DHOs can publish three main types of resources together with information on data access according to the FAIR principles via a graphical, web-based user interface:
- Study descriptions containing information on interventional or non-interventional studies from the clinical, epidemiological or public health domain.
- Study documents detailing the method and data collection instruments of the studies (e.g. templates of questionnaires, templates of patient information and consent forms, data dictionaries or variable catalogues, standard operating procedures, data management plans).
- Registers providing information on medical registers or databases that systematically collect data on specific diseases.
Since the information should be collected once and not multiple times, APIs are also available to transfer information from existing (internal) systems.
The publication policy provides the framework for publishing research data from the above-mentioned research areas in the Health Study Hub.
Development of the Health Study Hub
The development of the service started during the COVID-19 pandemic to establish a nationwide COVID-19 research information and advice infrastructure. To ensure the long-term availability of the service, the scope was extended to include personal health research data in Germany, and further development is being carried out within the NFDI4Health project. The number of stored studies, instruments and other resources is growing continuously and by June 2024 comprised over 1900 data entries.
