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Report . 2024
License: CC BY
Data sources: Datacite
ZENODO
Report . 2024
License: CC BY
Data sources: Datacite
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Survey by ECRIN about national registries for observational studies and sharing of individual participant data

Authors: Ohmann, Christian; Trillou, Christine; Klammt, Sebastian; Stamatopoulos, Kostas; O'Connor, Robert; Toschi, Elena; Monteiro, Emilia C.; +2 Authors

Survey by ECRIN about national registries for observational studies and sharing of individual participant data

Abstract

A survey within 8 European countries belonging to ECRIN (European Clinical Research Infrastructure Network) was performed to assess the status of national developments with respect to registries for observational clinical studies. Additionally, this survey was targeted at the needs and requirements for data sharing of individual participant data (IPD) from clinical trials/clinical studies. 6 out of the 8 countries included in the survey, reported about national activities with respect to registries for observational or health studies. From the survey it was concluded that a first step could be to integrate the national registries with the crMDR (clinical research Meta Data Repository) from ECRIN, covering all primary registers from WHO ICTRP (International Clinical Trials Registry Platform) plus ClinicalTrials.gov, Pubmed and some repositories for sharing of IPD (e.g. BioLINCC - Biological Specimen and Repository Information Coordinating Center, YODA - Yale University Open Data Access) (https://newmdr.ecrin.org/).

Keywords

study registry, data sharing, clinical trial, observational study, survey, individual participant data, ECRIN

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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!
0
Average
Average
Average
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