nfdi4health aims to create the most comprehensive inventory of German epidemiological, public health and clinical trial data to date. It builds 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 ensure a high degree of interoperability. Use cases covering prototypical study types and areas of research show the feasibility of a harmonised implementation of all infrastructures, tools and services in accordance with the user communities.
Main objectives of NFDI4Health are: (1) the implementation of a federated health data infrastructure in Germany for searching and accessing health care data and health databases, (2) to enhance data sharing and data linkage of personal health data in compliance with privacy regulations and ethics principles, (3) to enable the development and deployment of new consent management mechanisms and augmented data access services, and (4) to foster data sharing and cooperation between clinical research, epidemiological and public health communities.
Programme: nfdi4health - German National Research Data Infrastructure for Personal Health Data
SEEK ID: https://fairdomhub.org/projects/198
Public web page: https://www.nfdi4health.de
Organisms: Homo sapiens
FAIRDOM PALs: No PALs for this Project
Project start date: 1st Jul 2020
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Projects: WG Infrastructure for Translational Research, GMDS Project Group "FAIRe Dateninfrastrukturen für die Biomedizinische Informatik", FAIRDOM user meeting, COVID-19 related studies and tools in Germany, nfdi4health - German National Research Data Infrastructure for Personal Health Data
Institutions: University Medical Center Göttingen
Projects: COVID-19 related studies and tools in Germany, nfdi4health - German National Research Data Infrastructure for Personal Health Data
Institutions: ZB MED - Information Centre for Life Sciences
https://orcid.org/0000-0001-5246-9351Expertise: Data Management, Databases, Dynamic modelling, Ontology
Tools: Data Management, Java, semantic web, linux, sparql, Jena
Projects: nfdi4health - German National Research Data Infrastructure for Personal Health Data
Institutions: University of Cologne
https://orcid.org/0000-0002-2140-4616Expertise: Public Health
Tools: Data Management
Christin is a project manager at DOCYET. She has a degree in social work, public health and medical ethics. In addition to her full-time professional work, she is a PhD candidate at the University of Bremen. She has training and certificates in data stewardship, project & change & hospital management. The following research and application areas fascinate her mostly: health-related data/infrastructure, FAIRification, robotics in medicine, health standards and digital health solutions.
Projects: FAIRDOM, Early Metabolic Injury (LiSyM-EMI - Pillar I), Chronic Liver Disease Progression (LiSyM-DP - Pillar II), Regeneration and Repair in Acute-on-Chronic Liver Failure (LiSyM-ACLF - Pillar III), LiSyM Core Infrastructure and Management (LiSyM-PD), Liver Function Diagnostics (LiSyM-LiFuDi - Pillar IV), Model Guided Pharmacotherapy In Chronic Liver Disease (LiSyM-MGP), Multi-Scale Models for Personalized Liver Function Tests (LiSyM-MM-PLF), The Hedgehog Signalling Pathway (LiSyM-JGMMS), Molecular Steatosis - Imaging & Modeling (LiSyM-MSIM), Kinetics on the move - Workshop 2016, Example use cases, FAIRDOM user meeting, MS_DILI, COMBINE Multicellular Modelling, FAIRDOM & LiSyM & de.NBI Data Structuring Training, EnzymeML, GMDS Project Group "FAIRe Dateninfrastrukturen für die Biomedizinische Informatik", FAIRDOM Community Workers, COVID-19 Disease Map, COVID-19 related studies and tools in Germany, nfdi4health - German National Research Data Infrastructure for Personal Health Data, ModeleXchange initiative, SDBV/HITS, EDITH (Ecosystem Digital Twins in Health) test project
Institutions: Heidelberg Institute for Theoretical Studies (HITS gGmbH)
https://orcid.org/0000-0002-8683-7084Data management and standardization expert for systems biology and systems medicine, responsible for the data management user requirements and user contacts within the German LiSyM network (Liver Systems Medicine: http://lisym.org/) and associated to the FAIRDOM team. Involved in different standardization initiatives and committees, i.e. COMBINE (http://co.mbine.org), ISO/TC 276 Biotechnology (https://www.iso.org/committee/4514241.html), European COST action CHARME (http://www.cost-charme.eu) and ...
Projects: FAIRDOM, GMDS Project Group "FAIRe Dateninfrastrukturen für die Biomedizinische Informatik", COVID-19 Disease Map, COVID-19 related studies and tools in Germany, nfdi4health - German National Research Data Infrastructure for Personal Health Data, LiSyM Core Infrastructure and Management (LiSyM-PD), ModeleXchange initiative, SDBV/HITS, EDITH (Ecosystem Digital Twins in Health) test project
Institutions: Heidelberg Institute for Theoretical Studies (HITS gGmbH)
https://orcid.org/0000-0002-8318-3222nfdi4health aims to create the most comprehensive inventory of German epidemiological, public health and clinical trial data to date. It builds 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 ensure a high degree of interoperability. Use cases covering prototypical study types and areas of research show ...
Projects: COVID-19 related studies and tools in Germany, nfdi4health - German National Research Data Infrastructure for Personal Health Data
Web page: https://www.nfdi4health.de
Country: Germany
City: Berlin
Web page: https://www.bihealth.org/en/research/core-facilities/interoperability/
Country: Germany
City: Magdeburg
TA3 focusses on the services, service enabling tools, and software that NFDI4Health will provide to the user community. Most services and tools will be based on open source software that has already been developed by the (co-)applicants or by the broader scientific developer community. In close cooperation with TA4 and TA5, use case requirements and community feedback will help to further develop these tools and to foster interoperability of currently fragmented IT solutions for storage of metadata, ...
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nfdi4health Dokumente und (interne) Daten, SOPs, etc., die relevant für das gesamte Konsortium sind
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Key activities of TA1 concern the establishment of functional bodies and of the project governance for NFDI4Health.
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NFDI4Health task area 2 targets core deficits in medical sciences, i.e. the lack of harmonised standards for data and data quality management in clinical trials, public health surveys, and epidemiological cohorts, as well as the lack of information on and access to relevant standards. By making standards available, TA2 will improve the findability, accessibility and interoperability of existing and novel data bodies. For this purpose, guidelines, standards and policies on data management and ...
Submitter: Martin Golebiewski
Studies: NFDI4Health T2.1: Data management and publication policies, NFDI4Health T2.2: Data and metadata standards and integration, NFDI4Health T2.3: Data quality and data provenance, NFDI4Health T2.4: Standardisation of health data access and interoperabi...
Assays: No Assays
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With its focus on interaction, networking and exchange, task area 4 addresses the overall NFDI4Health Key Objective to support cooperation between clinical research, epidemiological and public health communities. It also provides training and education for the health research community and beyond, focusing on FAIR data principles.
Shared Space on OneDrive: https://onedrive.live.com/?id=4E57D2DCFD31954C%213715&cid=4E57D2DCFD31954C
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The main objective of task area 5 of NFDI4Health is to implement or to at least explore the possibilities to implement these infrastructure components in specific use cases which reflect core needs of the scientific community related to health data research. The use cases will address a range of areas which will lay the ground for future expansion for full coverage of the broad range of data collected in health research.
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Data protection regulations have to be taken into account on many levels of the infrastructure developed by NFDI4Health. Moreover, the health data managed by NFDI4Health belong to the so-called special categories of personal data, the processing of which is subject to particularly strict data protection requirements. But nevertheless, data protection law contains a variety of regulatory approaches of data processing for scientific research purposes, which are all aimed at a privileged treatment ...
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To achieve data “FAIRification by standardisation” and enable the user community to integrate heterogeneous and complex data, recommendations and guidelines will be developed for the consistent use of domain-specific standards for data formats, as well as for consistent data descriptions based on established metadata standards and terminologies. This standardisation concept will be based on existing standards, such as ISO 20691 and will include the definition of a minimal metadata set for ...
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This task T2.3 will target data quality as the “degree to which a set of inherent characteristics of data fulfils requirements” and provide consented standards and metrics to assess the data quality at different stages of the scientific data lifecycle. (1) It will first consider FAIR standards in collaboration with the FAIRMetrics group, FAIRsharing, and RDA FAIR Data Maturity Model group. (2) The second focus will be on adherence to defined data and metadata standards as recommended by nfdi4health ...
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T2.4 will define standardisation requirements and develop guidelines, as well as standard-based solutions for data access and interoperability in the defined use cases. To ensure compatibility with existing efforts aiming to improve data interoperability in medicine and healthcare, T2.4 also will coordinate its work closely with the same standardisation initiatives and technical committees of standardisation organisations as T2.2. To enable a seamless access and exchange of health data within the ...
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This task aims for policies for data management and publication in order to make data of public health studies findable and interoperable. To find information about studies and (meta-)data and to ensure their interoperability, it is necessary to document the descriptive core elements in a structured way already when planning projects. This applies both to data management and to the subsequent publication of research results and data and is particularly important for research projects handling ...
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The NFDI4Health Task Force COVID-19 Metadata Schema (MDS) Mapping to FHIR contains a list of properties describing a resource (study, questionnaire or document) being registered in the Central Search Hub of the NFDI4Health Task Force COVID-19 and their mapping to FHIR.
Creators: Sophie Klopfenstein, Aliaksandra Shutsko, Moritz Lehne, Matthias Löbe, Carsten Oliver Schmidt, Carina Vorisek, Julian Sass, Sylvia Thun
Submitter: Sophie Klopfenstein
Investigations: No Investigations
Studies: No Studies
Assays: No Assays
The NFDI4Health Task Force COVID-19 Metadata Schema Mapping (Metadata Schema Mapping) contains a list of properties describing a resource being registered in the Study Hub of the NFDI4Health Task Force COVID-19 (Study Hub) and how those properties align with other standards (FHIRE, CDISK, DRKS, ITRCP)
Creators: None
Submitter: Martin Golebiewski
Investigations: No Investigations
Studies: No Studies
Assays: No Assays
The NFDI4Health Task Force COVID-19 Metadata Schema (Metadata Schema) contains a list of properties describing a resource being registered in the Study Hub of the NFDI4Health Task Force COVID-19 (Study Hub).
Creators: Aliaksandra Shutsko, Carsten Oliver Schmidt, Johannes Darms, Martin Golebiewski, Moritz Lehne, Matthias Löbe, Sophie Klopfenstein, Carina Nina Vorisek
Submitter: Martin Golebiewski
Investigations: No Investigations
Studies: No Studies
Assays: No Assays
Abstract (Expand)
Authors: Julian Sass, Alexander Bartschke, Moritz Lehne, Andrea Essenwanger, Eugenia Rinaldi, Stefanie Rudolph, Kai Uwe Heitmann, Joerg Janne Vehreschild, Christof von Kalle, Sylvia Thun
Date Published: 29th Jul 2020
Publication Type: Journal
DOI: 10.1101/2020.07.27.20162636
Citation: medrxiv;2020.07.27.20162636v1,[Preprint]
Investigations: No Investigations
Studies: No Studies
Assays: No Assays