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Integration von Bestandsdaten aus Kohorten- und Registerstudien in ein existierendes Forschungsnetzwerk: Nationales Pandemie Kohorten Netz (NAPKON).
Integration of inventory data from cohort and registry studies into an existing research Network: National Pandemic Cohort Network (NAPKON).
Gesundheitswesen 86, 647-654 (2024)
In the early phase of the COVID-19 pandemic, many local collections of clinical data on patients infected with SARS-CoV-2 were initiated in Germany. As part of the National Pandemic Cohort Network (NAPKON) of the University Medicine Network, the "Integration Core" was established to design the legal, technical and organisational requirements for the integration of inventory data into ongoing prospective data collections and to test the feasibility of the newly developed solutions using use cases (UCs). Detailed study documents of the data collections were obtained. After structured document analysis, a review board evaluated the integrability of the data in NAPKON according to defined criteria. Of 30 university hospitals contacted, 20 responded to the request. Patient information and consent showed a heterogeneous picture with regard to the pseudonymised transfer of data to third parties and re-contact. The majority of the data collections (n=13) met the criteria for integration into NAPKON; four studies would require adjustments to the regulatory documents. Three cohorts were not suitable for inclusion in NAPKON. The legal framework for retrospective data integration and consent-free data use via research clauses (§27 BDSG) was elaborated by a legal opinion by TMF - Technology, Methods and Infrastructure for Networked Medical Research, Berlin. Two UCs selected by the NAPKON steering committee (CORKUM, LMU Munich; Pa-COVID-19, Charité- Universitätsmedizin Berlin) were used to demonstrate the feasibility of data integration in NAPKON by the end of 2021. Quality assurance and performance-based reimbursement of the cases were carried out according to the specifications. Based on the results, recommendations can be formulated for various contexts in order to create technical-operational prerequisites such as interoperability, interfaces and data models for data integration and to fulfil regulatory requirements on ethics, data protection, medical confidentiality and data access when integrating existing cohort data. The possible integration of data into research networks and their secondary use should be taken into account as early as the planning phase of a study - particularly with regard to informed consent - in order to maximise the benefits of the data collected.
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Publication type
Article: Journal article
Document type
Scientific Article
Keywords
Datenintegration; Bestandsdaten; Covid-Pandemie; Data integration; inventory data; covid pandemic
Language
german
Publication Year
2024
HGF-reported in Year
2024
ISSN (print) / ISBN
0941-3790
e-ISSN
1439-4421
Journal
Gesundheitswesen, Das
Quellenangaben
Volume: 86,
Issue: 10,
Pages: 647-654
Publisher
Thieme
Publishing Place
Rudigerstr 14, D-70469 Stuttgart, Germany
Reviewing status
Peer reviewed
Institute(s)
Institute of Epidemiology (EPI)
POF-Topic(s)
30202 - Environmental Health
Research field(s)
Genetics and Epidemiology
PSP Element(s)
G-504091-004
WOS ID
001336645600011
WOS ID
001296651700001
Scopus ID
85206017241
PubMed ID
39173676
Erfassungsdatum
2024-10-02