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NFDI4Health

National Research Data Infrastructure for Personal Health Data 

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What is NFDI4Health?

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.

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.

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 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 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.
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.

Task Areas

TA1 - Coordination

TA1 focuses on project coordination measures including overall project financial controlling, dissemination, public relations and outreach to political decision makers. Read more

TA2 - Standards for FAIR Data

TA2 evaluates and develops standards for findability and interoperability. This concerns data management and publication policies, (meta-)data standard harmonization, data quality assessment as well as standardization of health data access. Read more

TA3 - Services

TA3 uses the standards provided by TA2 to deliver NFDI4Health services, service enabling tools and the necessary technical support. These include a central search service, tools supporting data quality assessments and metadata annotations. They also include services for data use and access, as well as data/software repositories and archiving services. Moreover, TA3 offers advanced distributed data analysis services. Read more

TA4 - Community & Networking

TA4 addresses the needs and demands of the scientific community, informs and trains our user community and organizes community participation by disseminating tools and knowledge to and triggering feedback from the community. Read more 

TA5 - Use Cases

TA5 implements the standards and services developed in TA2 and 3 in thematic use cases which cover a broad range of needs expressed by the user community during the planning phase of NFDI4Health. Each use case will serve as an example for a specific challenge for FAIRification of personal health data. Based on these use cases, we will develop and apply practical solutions that will facilitate the whole process from findability to reuse. Read more

TA6 - Privacy & Data Access in Concert

TA6 is concerned with the legal framework conditions (EU GDPR) of data protection and data privacy, secure record linkage and solutions such as broad consent and differential privacy, e.g., via simulation of synthetic health data. Read more

Participation

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Community

We strongly believe that active community involvement is crucial to develop the best solutions to NFDI4Health challenges. Learn more about our activities here.
Read more
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Citizen Science

NFDI4Health is currently setting up four projects in the field of citizen science. The aim is to reduce fears of data use through intensive exchange with interested citizens.
Read more

Our Services

Health Study Hub

The German Central Health Study Hub allows researchers to publish their project characteristics, documents and data related to their research project in a FAIR manner or to find information about past and ongoing studies.

Data Train

The Data Train cross-disciplinary graduate training programme, a core element of the NFDI4Health training approach, aims at building the next generation of data-savvy researchers in the biomedical sciences.

Personal Health Train

To foster data-driven innovation in medicine, we developed a distributed analysis infrastructure that enables research on sensitive data without prior data sharing while supporting diverse data formats.

Local Data Hub

The LDH is the local node in the federated concept of NFDI4Health. We develop and promote the dissemination of a unified data sharing platform based on the FAIR principles in line with the NFDI4Health standards.

Data publication

Health data, as collected in clinical trials and epidemiological, as well as public health studies, cannot be freely published, but are valuable datasets whose reuse is of high importance for health research. NFDI4Health has established a metadata standard and process for the publication of health studies to make health data FAIR.

Data harmonisation

To make health studies and their data FAIR we have developed guidelines and standards for metadata description and data sharing. We have developed data publication guidelines, common metadata description standards and adaptations of health data interoperability standards to harmonize the description of studies and their corresponding metadata.

Data Quality Assessment

It is a paradox: on the one hand, good scientific work depends on high data quality. On the other hand, a lot of effort is put into the design and conduct of studies, but not into data quality assessments. We help to facilitate the efficient performance of such assessments with versatile concepts and tools

DataSHIELD

Expansion of decentralised research projects with DataSHIELD: Until now, data protection concerns and the lack of special IT infrastructure have prevented the expansion of cross-institutional research projects. DataSHIELD is intended to solve that problem.

Our Partners

ZB MED
BIPS
DIFE
Fraunhofer
HITS
KKSN
MDC
RKI
TMF
Universität Bonn
Uni Bremen
Universität Leipzig
HS Mittweida
Universitätsmedizin Göttingen
Unimedizin Greifswald
BIH
USB Köln

Funding

The partners of the NFDI consortium NFDI4Health are funded by the German Research Foundation (DFG) within the framework of the “Agreement between the Federal Government and the Länder Concerning the Establishment and Funding of a National Research Data Infrastructure” of 26 November 2018. To coordinate the activities, the partners of NFDI4Health participate as far as possible as members in the National Research Data Infrastructure (NFDI) e. V. association and participate in the various bodies and other structures of the association in accordance with its statutes.

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