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https://dx.doi.org/10.17192/bf...
Article . 2021
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OPUS Augsburg
Article . 2022
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NFDI4Health – Nationale Forschungsdateninfrastruktur für personenbezogene Gesundheitsdaten

Authors: Fluck, Juliane; Lindstaedt, Birte; Ahrens, Wolfgang; Beyan, Oya; Buchner, Benedikt; Darms, Johannes; Depping, Ralf; +27 Authors

NFDI4Health – Nationale Forschungsdateninfrastruktur für personenbezogene Gesundheitsdaten

Abstract

doch erfüllen Studienprotokolle, eingesetzte Erhebungsinstrumente und erhobene Daten die Anforderungen der FAIR-Prinzipien nicht in ausreichendem Maße. NFDI4Health wird daher eine Struktur schaffen, die eine zentrale Suche nach existierenden, dezentral verwalteten Datenkörpern und zugehörigen Dokumenten sowie einen FAIRen Zugang zu diesen erleichtert. Dazu werden die Auffindbarkeit und der Zugang zu strukturierten Gesundheitsdaten aus Registern, administrativen Gesundheitsdatenbanken, klinischen und epidemiologischen sowie Public Health-Studien verbessert und die Qualität und Harmonisierung der zugrundeliegenden Daten optimiert.Eine weitere Herausforderung entsteht durch die Verwendung personenbezogener Gesundheitsdaten. Diese sind hoch sensibel, so dass ihre Nutzung restriktive Datenschutzbestimmungen und informierte Einwilligungserklärungen der Studienteilnehmenden erfordert, was jedoch ihre Wiederverwendbarkeit einschränkt. NFDI4Health zielt daher darauf ab, den Austausch und die Verknüpfung von personenbezogenen Gesundheitsdaten sowie verteilte Datenanalysen unter Einhaltung datenschutzrechtlicher und ethischer Bestimmungen zu erleichtern. Um dies möglichst effizient zu erreichen, wird NFDI4Health die Entwicklung neuer, maschinenprozessierbarer Zustimmungsmöglichkeiten sowie innovativer Datenzugriffsservices auf Grundlage der FAIR-Prinzipien vorantreiben und die Interoperabilität von IT-Lösungen für Metadatenrepositorien stärken. Komplementiert wird dies durch die Entwicklung entsprechender Angebote für Training und Ausbildung, um der Herausforderung der Umsetzung der Lösungen in den Universitäten und Forschungseinrichtungen zu begegnen. Schließlich wird durch die gemeinsame Arbeit in der NFDI4Health die Kooperation zwischen klinischer und epidemiologischer/Public Health-Forschung gestärkt.

Country
Germany
Keywords

Technology, T, 830, Forschungsdatenmanagement, Gesundheitsdaten, Forschungsdatenmanagement; Gesundheitsdaten; FAIR;, Gesundheitsdaten ; FAIR ; Forschungsdatenmanagement, Cardiovascular and Metabolic Diseases, Integrative Biomedicine [Topic 3], ddc:340, FAIR

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    selected citations
    These citations are derived from selected sources.
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    6
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Top 10%
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
6
Top 10%
Average
Average
Green
Published in a Diamond OA journal