Table 2.
List of most important literature from the SLRa used for taxonomy development.
| Study | Year | Title | |||
| Top 10 academic papers | |||||
|
|
Alvarellos et al [42] | 2023 | Democratizing clinical-genomic data: How federated platforms can promote benefits sharing in genomics | ||
|
|
Almeida and Oliveira [30] | 2024 | MONTRA2b: A web platform for profiling distributed databases in the health domain | ||
|
|
Almeida et al [19] | 2023 | A FAIRc approach to real-world health data management and analysis | ||
|
|
Bergeron et al [17] | 2018 | Fostering population-based cohort data discovery: The Maelstrom Research cataloguing toolkit | ||
|
|
Scheider et al [41] | 2023 | Exploring design elements of personal data markets | ||
|
|
Ehrlinger et al [26] | 2021 | Data catalogs: a systematic literature review and guidelines to implementation | ||
|
|
Labadie et al [24] | 2020 | Fair enough? enhancing the usage of enterprise data with data catalogs | ||
|
|
Lovestone and EMIF Consortium [10] | 2020 | The European medical information framework: a novel ecosystem for sharing health care data across Europe | ||
|
|
Oliveira et al [15] | 2019 | EMIFd Catalogue: a collaborative platform for sharing and reusing biomedical data | ||
|
|
Swertz et al [5] | 2022 | Towards an Interoperable Ecosystem of Research Cohort and Real-world Data Catalogues Enabling Multi-center Studies | ||
| Top 5 nonacademic papers | |||||
|
|
European Medicines Agency [43] | 2022 | Good Practice Guide for the use of the Metadata Catalogue of Real-World Sources | ||
|
|
European Medicines Agency [44] | 2022 | List of metadata for Real World Data catalogues | ||
|
|
Directorate-General for Health and Food Safety [82] | 2022 | The European Health Data Space | ||
|
|
Jahnke and Otto [25] | 2022 | Data Catalogs - Implementing Capabilities for Data Curation, Data Enablement and Regulatory Compliance | ||
|
|
TEHDASe [16] | 2022 | EHDSf Semantic interoperability framework | ||
aSLR: structured literature review.
bMONTRA2: Modular Next-generation Research Analysis.
cFAIR: findability, accessibility, interoperability, and reusability.
dEMIF: European Medical Information Framework Catalogue.
eTEHDAS: Towards European Health Data Space.
fEHDS: European Health Data Space.