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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 questionnaires, 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 epidemiological, public health and clinical trial data to date. NFDI4Health will build a centralised data catalogue with elaborate search functionalities, sophisticated data access management, 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.
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 trial.
BIPS has taken on central tasks in the NFDI4Health consortium: Iris Pigeot is deputy spokesperson of the overall consortium and lead of Task Area 1 "Coordination" (together with Juliane Fluck (ZB MED)) as well as lead of Task Area 5 "Use Cases" (together with Matthias Schulze (DIfE)); Hajo Zeeb is lead of Task Area 4 "Community & Networking" (together with Jens Dierkes (USB Cologne)). In addition, BIPS has assumed responsibility for a number of measures: T1.3 "Communication and public relations" (Iris Pigeot), T4.4 "Networking with NFDI and beyond" (Iris Pigeot), T4.5 "Citizen and patient involvement" (Hajo Zeeb), T5.2 "Use case 'Epidemiology of chronic diseases'" (Hajo Zeeb), T5. 3 "Use case 'Secondary data and record linkage'" (Wolfgang Ahrens, Iris Pigeot), T6.5 "Best practice of record/data linkage with regard to data privacy and data protection requirements" (Wolfgang Ahrens).
Translated with www.DeepL.com/Translator (free version)