Frequently Asked Questions

About Data Publication for personalised health data

Personal health data cannot be publicly shared, however, high-level metadata describing the data collected can be shared, along with information on how to access the data. 

NFDI4Health has developed a generic information model to describe and preserve high-level metadata describing health-related studies. The resulting modular study metadata schema (MDS) covers clinical, epidemiological and public health studies, and includes data access and sharing options (learn more).

As an infrastructure for publishing such preservation metadata, NFDI4Health has developed the German Central Health Study Hub (learn more). 

About the German Central Health Study Hub

The German Central Health Study Hub (Health Study Hub for short) is a platform to find and publish personal health research data. It allows scientists and data-holding organisations (data producers) to publish the metadata that characterises their research data, as well as documents and data related to their research, according to the FAIR principles. It also helps scientists or researchers (data consumers) to find information about past and ongoing studies in order to reuse existing research data for their projects. 

About our publication policy, licenses and DOIs

In the Health Study Hub, you can publish three main types of resources: 

Study descriptions containing comprehensive information (metadata) about interventional or non-interventional studies from the clinical, epidemiological or public health sector. 

Study documents which provide information about studies or research-related content such as design, conduct or instruments. Study documents could be made available for download when providing a data file. You can find an overview of the study documents that can be published here

Registries providing information about registries or databases systematically collecting data about particular diseases or conditions. 

Please note that participant/patient individual data collected in studies are not considered a resource type and will not be published in the Health Study Hub. However, information on the availability of the collected data must be provided as part of a study description. 

Help with the register process

There are two ways to register your data: 

  1. Create a user account and fill in the registration form with the information (metadata) about your health-related study or study document. You can also contact us via, and we will assist you with the registration of your research data.
  2. You can use an API to automatically submit metadata and study documents to our portal. For more information on our API, see the documentation under 

About Research Data Management

There is no consensus on the definition of research data. It varies depending on disciplines and research funders. According to the German Research Foundation, research data might consist of measurement data, laboratory values, audiovisual information, texts, survey data, objects from collections, or samples that were created, developed or evaluated during scientific work. Methodical forms of testing such as questionnaires, software and simulations could also be categorized as research data (1). 

In general, research data refer to data originated in the scientific work process and serve as the basis of every research activity (2). 

Examples of research data in biomedicine (3): 

  • Data from basic research (e.g. sequencing or -omics data) 
  • Electronic Medical Records (EMRs) and Electronic Health Records (EHRs) 
  • Patient/disease registries (e.g. ENCePP Resources Database) 
  • Health surveys (e.g. National Cohort Study (NAKO)) 
  • Clinical and health data (e.g. European Health Information Portal) 
  • Clinical trials registries and databases (e.g. German Clinical Trials Register (DRKS)) 
  • Catalogue for population health data 
  • Thesauri, ontologies and classifications and codes of diseases or substances (e.g. International Statistical Classification of Diseases and Related Health Problems (ICD)) 


(1) Deutsche Forschungsgemeinschaft. DFG Guidelines on the Handling of Research Data [Internet]. 2015 [cited 2023 Dec 15]. Available from: 

(2) PUBLISSO. Research Data Management [Internet]. [cited 2023 Dec 15]. Available from: 

(3) Fürst J, Lindstädt B, Perrar I, Shutsko A, Vandendorpe J. NFDI4Health Online Training Workshop on Research Data Management in (Bio-)Medicine [Internet]. [cited 2023 Dec 15]. Available from: 

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