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