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The search process begins as usual, with users entering keywords or phrases in the search field of the German Central Health Study Hub. The new 'Add Filter' feature allows users to narrow down their searches to specific metadata elements of registered studies, instruments, and other resources. This feature incorporates search options such as 'Includes', 'Excludes', and 'Equals' to facilitate precise queries. For example, researchers can search for titles or descriptions containing specific terms, locate specific authors or organizations, or exclude studies with particular design details.
The Health Study Hub's inventory of metadata on clinical, public health, and epidemiological research data simplifies the discovery of past and ongoing studies, survey instruments, study documents, health registers, administrative databases, and relevant access rights. As of July 2024, the number of stored studies, instruments, and other resources exceeds 1970 data entries, and continues to grow. Additionally, the platform enables the search and comparison of variable catalogues and over 13,000 variables collected in questionnaires and datasets. This capability enhances potential for cross-study data analyses and forms the basis for data harmonization.
Publishing Data from Health Research
Scientists and data-holding organizations can publish three main types of resources, along with information on data access following FAIR principles, through a graphical, web-based user interface:
- Study descriptions: Information on interventional or non-interventional studies from the clinical, epidemiological, or public health domains.
- Study documents: Details on the methods and data collection instruments used in studies (e.g., questionnaire templates, patient information and consent forms, data dictionaries or variable catalogues, standard operating procedures, data management plans).
- Registers: Information on medical registers or databases systematically collecting data on specific diseases.
To ensure information is collected once and not redundantly, Application programming interfaces are available to transfer data from existing (internal) systems.
Development of the Health Study Hub
Development of the service commenced during the COVID-19 pandemic to establish a nationwide COVID-19 research information and advice infrastructure. The scope has since expanded to include personal health research data in Germany, with ongoing development under the NFDI4Health project to ensure long-term availability.
Short Video on the Health Study Hub
Watch on YouTube.
