The German Central Health Study Hub ‒ known for short as the Health Study Hub ‒ is a platform where users can publish and search for research data from clinical, epidemiological and public-health studies.
Find health research data
The goal of the Health Study Hub is to provide a comprehensive overview of German health research. The platform aggregates and harmonises health data from public repositories such as the German Clinical Trials Register (DRKS), ClinicalTrials.gov and the WHO International Clinical Trials Registry Platform (WHO ICTRP). It also enables scientists and data holding organisations (DHOs) to submit metadata of their studies, documents, data, datasets and registers.
By compiling an inventory of metadata that describes clinical, public-health and epidemiological research data, the Health Study Hub makes it easier to track down ongoing and completed studies, survey instruments, study documents, health registries, administrative databases and data access rights.
Users can also run searches and comparisons of variable catalogues of over 12,900 variables collected in questionnaires and datasets. This increases the potential for cross-study data analyses and provides the basis for harmonisation.
Publish health research data
Using the platform's web-based graphical user interface, researchers and DHOs can publish the following three main types of resource together with information on data access based on FAIR principles:
- Study descriptions containing information on interventional or non-interventional studies from the clinical, epidemiological or public-health domain.
- Study documents detailing the study method and data collection tools (e.g. questionnaires, templates of patient information and consent forms, data dictionaries/variable catalogues, standard operating procedures, data management plans).
- Registry description of medical or public-health registries that systematically collect and store data on specific diseases or conditions.
Since the goal is to collect the information once rather than multiple times, APIs are also available to transfer information from existing (internal) systems.
The publication policy provides a framework for publishing research data from the above-mentioned research areas in the Health Study Hub.
Development of the Health Study Hub
Development of the service began during the COVID-19 pandemic, the initial goal being to establish a nationwide COVID-19 research information and advice infrastructure. To ensure continued availability of the service over the long term, the scope of the platform was expanded to include personal health-research data in Germany, and development of the Health Study Hub is now continuing as part of the NFDI4Health project. The number of studies, instruments and other resources deposited in the hub has been growing steadily, with the figure exceeding 27,000 entries by August 2024.
