NFDI4Health - National Research Data Infrastructure for Personal Health Data
Germany has accumulated a wealth of health-related personal data from well-designed cohort studies and health surveillance systems (healthy individuals) as well as clinical trials (patients) that are characterised by a deep phenotyping of study subjects with ques-tionnaires, medical examinations and molecular/genetic profiling. Their longitudinal nature and high quality make these data a valuable research resource for the development of preventive and therapeutic measures on the individual and the population level. NFDI4Health represents an interdisciplinary research community by integrating major German institutions experienced as data holders, data analysts and methodology developers. It builds on established structures, competences and know-how and expects a rapidly growing support and participation of the research community.
NFDI4Health aims to create the most comprehensive inventory of German epidemio-logical, public health and clinical trial data to date. NFDI4Health will build a centralised data catalogue with elaborate search functionalities, sophisticated data access manage-ment, and a data analysis toolbox, while respecting stringent requirements for privacy concerning personal health data. Standardisation services will ensure a high degree of interoperability. Use cases covering prototypical study types and areas of research will show the feasibility of a harmonised implementation of all infrastructures, tools and services in accordance with our user communities.
The specific aims of NFDI4Health are (1) to enable findability of and access to structured health data from registries, administrative health databases, clinical trials, epidemiological studies and public health surveillance; (2) to implement a health data framework for centralised searching and access of existing decentralised epidemiological/clinical data infrastructures; (3) to facilitate data sharing, record linkage, harmonised data quality assessments, federated analyses of personal health data, while complying with privacy regulations and ethical requirements; (4) to enable the development and deployment of new machine-processable consent mechanisms and innovative data access services by operationalising the FAIR (Findable, Accessible, Interoperable, Reusable) principles for scientific data management and stewardship; (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; (7) to develop business models to secure the sustainability of structures and services.
NFDI4Health will increase the visibility and accessibility of research data, enhancing the reputation of scientists sharing their data and fostering new collaborations. The resulting infrastructure will build bridges between user communities and data holders from epidemiology, public health and clinical trials.
