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Metadata for data dIscoverability aNd study rEplicability in obseRVAtional Studies (MINERVA) : development and pilot of a metadata list and catalogue in Europe
ID
Pajouheshnia, Romin
(
Author
),
ID
Gini, Rosa
(
Author
),
ID
Gutierrez, Lia
(
Author
),
ID
Swertz, Morris A.
(
Author
),
ID
Hyde, Eleanor
(
Author
),
ID
Sturkenboom, Miriam C.
(
Author
),
ID
Arana, Alejandro
(
Author
),
ID
Franzoni, Carla
(
Author
),
ID
Locatelli, Igor
(
Author
),
ID
Jazbar, Janja
(
Author
),
ID
Žerovnik, Špela
(
Author
),
ID
Kos, Mitja
(
Author
)
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MD5: AD77C1C709027DFC590D28504CE97B3C
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https://onlinelibrary.wiley.com/doi/epdf/10.1002/pds.5871
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Abstract
Purpose: Metadata for data dIscoverability aNd study rEplicability in obseRVAtional studies (MINERVA), a European Medicines Agency–funded project (EUPAS39322), defined a set of metadata to describe real-world data sources (RWDSs) and piloted metadata collection in a prototype catalogue to assist investigators from data source discoverability through study conduct. Methods: A list of metadata was created from a review of existing metadata catalogues and recommendations, structured interviews, a stakeholder survey, and a technical workshop. The prototype was designed to comply with the FAIR principles (findable, accessible, interoperable, reusable), using MOLGENIS software. Metadata collection was piloted by 15 data access partners (DAPs) from across Europe. Results: A total of 442 metadata variables were defined in six domains: institutions (organizations connected to a data source); data banks (data collections sustained by an organization); data sources (collections of linkable data banks covering a common underlying population); studies; networks (of institutions); and common data models (CDMs). A total of 26 institutions were recorded in the prototype. Each DAP populated the metadata of one data source and its selected data banks. The number of data banks varied by data source; the most common data banks were hospital administrative records and pharmacy dispensation records (10 data sources each). Quantitative metadata were successfully extracted from three data sources conforming to different CDMs and entered into the prototype. Conclusions: A metadata list was finalized, a prototype was successfully populated, and a good practice guide was developed. Setting up and maintaining a metadata catalogue on RWDSs will require substantial effort to support discoverability of data sources and reproducibility of studies in Europe.
Language:
English
Keywords:
metadata
Work type:
Article
Typology:
1.01 - Original Scientific Article
Organization:
FFA - Faculty of Pharmacy
Publication status:
Published
Publication version:
Version of Record
Year:
2024
Number of pages:
12 str.
Numbering:
Vol. 33, iss. 8, e5871
PID:
20.500.12556/RUL-160098
UDC:
001.103.2
ISSN on article:
1053-8569
DOI:
10.1002/pds.5871
COBISS.SI-ID:
204502019
Publication date in RUL:
20.08.2024
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4
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Title:
Pharmacoepidemiology and drug safety
Shortened title:
Pharmacoepidemiol. drug saf.
Publisher:
Wiley
ISSN:
1053-8569
COBISS.SI-ID:
1515540
Licences
License:
CC BY-NC-ND 4.0, Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International
Link:
http://creativecommons.org/licenses/by-nc-nd/4.0/
Description:
The most restrictive Creative Commons license. This only allows people to download and share the work for no commercial gain and for no other purposes.
Secondary language
Language:
Slovenian
Keywords:
metapodatki
Projects
Funder:
Other - Other funder or multiple funders
Funding programme:
European Medicines Agency
Project number:
EMA/2017/09/PE/16
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