Das Netzwerk Universitätsmedizin: Technisch-organisatorische Ansätze für Forschungsdatenplattformen

R Heyder, NUKLEUS Study Group… - Bundesgesundheitsblatt …, 2023 - Springer
Zusammenfassung Das Netzwerk Universitätsmedizin (NUM) besteht aus den 36
Standorten der Universitätsmedizin in Deutschland. Der Auftrag ist die Koordinierung der …

What prevents us from reusing medical real-world data in research

J Gehrmann, E Herczog, S Decker, O Beyan - Scientific Data, 2023 - nature.com
Medical real-world data stored in clinical systems represents a valuable knowledge source
for medical research, but its usage is still challenged by various technical and cultural …

[HTML][HTML] Patients' willingness to provide their clinical data for research purposes and acceptance of different consent models: findings from a representative survey of …

A Köngeter, C Schickhardt, M Jungkunz… - Journal of Medical …, 2022 - jmir.org
Background Secondary use of clinical data for biomedical research purposes holds great
potential for various types of noninterventional, data-driven studies. Patients' willingness to …

The German Network of University Medicine: technical and organizational approaches for research data platforms

R Heyder - Bundesgesundheitsblatt, Gesundheitsforschung …, 2023 - europepmc.org
Abstract Das Netzwerk Universitätsmedizin (NUM) besteht aus den 36 Standorten der
Universitätsmedizin in Deutschland. Der Auftrag ist die Koordinierung der …

Towards a national portal for medical research data (fdpg): Vision, status, and lessons learned

HU Prokosch, M Gebhardt, J Gruendner… - Caring is sharing …, 2023 - ebooks.iospress.nl
Harmonizing medical data sharing frameworks is challenging. Data collection and formats
follow local solutions in individual hospitals; thus, interoperability is not guaranteed. The …

Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison

R Horn, J Merchant - European Journal of Human Genetics, 2023 - nature.com
This article reports on the findings of an international workshop organised by the UK-France
Genomics and Ethics Network (UK-FR GENE) in 2021. They focus specifically on how …

A FHIR has been lit on gICS: facilitating the standardised exchange of informed consent in a large network of university medicine

M Bialke, L Geidel, C Hampf, A Blumentritt… - BMC Medical Informatics …, 2022 - Springer
Abstract Background The Federal Ministry of Education and Research of Germany (BMBF)
funds a network of university medicines (NUM) to support COVID-19 and pandemic research …

Charlie and the Semi-Automated Factory: Data-Driven Operator Behavior and Performance Modeling for Human-Machine Collaborative Systems

E Park, Y Jung, I Kim, U Lee - Proceedings of the 2023 CHI Conference …, 2023 - dl.acm.org
A semi-automated manufacturing system that entails human intervention in the middle of the
process is a representative collaborative system that requires active interaction between …

Unfolding values through systematic guidance: Conducting a value-centered participatory workshop for a patient-oriented data donation

D Leimstädtner, P Sörries, C Müller-Birn - Proceedings of Mensch und …, 2022 - dl.acm.org
Routinely collected clinical patient data posits a valuable resource for data-driven medical
innovation. Such secondary data use for medical research purposes is dependent on the …

GBA/GBN-position on the feedback of incidental findings in biobank-based research: consensus-based workflow for hospital-based biobanks

J Geiger, J Fuchs, M Starke, M Neumann… - European Journal of …, 2023 - nature.com
Incidental research findings pose a considerable challenge to hospital-based research
biobanks since they are acting as intermediaries between healthcare and research. In a joint …