NFDI4Health

The overarching goal of NFDI4Health is to support its clinical and epidemiological research community in the best possible way to share their data with the user community in agreement with data protection/privacy regulations and ethics principles and, in the interest of improving population health, create new data analytics opportunities within the German NFDI.

To reach these goals in accordance with the FAIR data principles, the key objectives of NFDI4Health are

1. to enable findability of and access to structured health data from clinical trials, epidemiological studies, disease registries, administrative health databases and public health surveillance in Germany
2. to implement a health data framework for centralised searching and accessing existing decentralised epidemiological/clinical trial data infrastructures
3. to facilitate data sharing, record linkage, harmonised data quality assessments, federated analyses of personal health data
4. to enable the development and deployment of new, machine-processable consent mechanisms and innovative data access services
5. to support cooperation between clinical trial research, epidemiological and public health communities
6. to foster interoperability of currently fragmented IT solutions related to metadata repositories, cohort browsing, data quality and harmonisation.

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.

NFDI4Health: Mission The mission of NFDI4Health is to provide new opportunities for the scientific use of personal health data while respecting privacy requirements. Based on the FAIR principles, services are provided to researchers to permanently store, semantically enrich and share data in interoperable form and to merge data from different sources.

NFDI4Health: Objectives The NFDI intents to systematically make the databases of science and research accessible, secure them in the long term, and network them (inter)nationally. Embedded in this overarching framework, the aims of NFDI4Health are to

1. Enable findability of and access to structured health data.
2. Obtain federal framework for data holding organizations.
3. Facilitate exchange and record linkage of personal health data in compliance with privacy regulations and ethical requirements.
4. Establish automated services (e.g. search, analysis tools).
5. Foster interoperability and reusability of data.
6. Enhance use case-oriented collaboration among research communities.

NFDI4Health will increase the visibility and accessibility of research data, enhance the reputation of scientists who share their data, and foster new collaborations.

NFDI4Health: Benefit NFDI4Health increases the performance and quality of health science research and thus helps to improve the health of the population. NFDI4Health will achieve this aim by increasing the national and international visibility of health science research, by strengthening the reputation of researchers who share their data, and by fostering new collaborations. The resulting infrastructures will bridge the gap between users and providers of epidemiological, public health and clinical trial data.

NFDI4Health: Cooperations NFDI4Health is made up of an interdisciplinary team of 17 partners. A total of 48 renowned institutions from the health sector have assured their participation, including, for example, major professional societies or important epidemiological cohorts; letters of support have been received from 37 international institutions.

NFDI4Health: services developed and services provided Based on the needs of the user community, NFDI4Health is developing services that enable researchers to permanently store, semantically enrich and share data in interoperable form and to merge data from different sources. First available services can be found here:

• The NFDI4Health study portal is intended to enable the findability of studies and access to structured health data.
• The publication guidelines and the metadata schema form the cornerstone for the standardized collection of metadata of health-related studies and their publication in our Study Hub.
• pre:VIEW was developed within the framework of the NFDI4Health Task Force COVID-19 and offers advanced search and filter functions for abstracts, direct links to the corresponding full texts and export functions for retrieved results. The abstracts are updated daily.