ECRAID-Base_Deliverable report 9.7_Cloud-based platform for GDPR-compliant actual sharing of multiple data types

In this task, we aimed to leverage the infrastructure provided by the Reconciliation of Cohort Data in Infectious Diseases (ReCoDID) project and Versatile Emerging Infectious Disease Observatory (VEO), including the data archives provided by the European Molecular Biology Laboratory's European Bioinformatics Institute (EMBL-EBI) for long-term storage of participant-level data, and ethical and equitable sharing of de-identified participant-level clinical-epidemiological (clin-epi) data and OMICs data from ECRAID-Base perpetual observational studies (POSs). To maximise the utility of ECRAID-Base outputs, ECRAID-Base operates under the maxims ‘As open as possible and as closed as necessary’ and FAIR-by-design. FAIR-by-design is the prospective implementation of the Findable, Accessible, Interoperable and Reusable (FAIR) principles for data and data resources. The FAIR-by-design approach ensures that the universe of ECRAID-Base outputs, including protocols, data management plans (DMPs), informed consent forms (ICFs) and outputs such as datasets, presentations, and publications, are FAIR, which facilitates their reuse through investing in findability, accessibility, and interoperability and allowing for broad reuse of outputs through permissive licences. Identifying and using a cloud-based platform for GDPR-compliant sharing and reusing the POS participant-level data is an integral part of ECRAID-Base’s FAIR-by-design strategy, specifically regarding enabling equitable, ethical data reuse and Open Science, which does not mean open data. We reviewed the trusted digital repositories (TDRs) landscape in Europe and beyond to ensure that EMBL-EBI’s infrastructure for sensitive data reuse was the best option for the long-term preservation and reuse of ECRAID-Base data. The repositories under consideration were evaluated based on their adherence to FAIR principles, data governance policies, metadata catalogues, and compliance with established frameworks evaluating digital preservation resources, including the TRUST principles, among others. This work supports ECRAID-Base’s mission to advance open science, reproducibility, and cross-border research collaborations by establishing a robust governance framework and leveraging established digital infrastructure. These efforts will help ECRAID-Base deliver on their mission to strengthen Europe’s response to emerging infectious diseases and ensure that publicly funded research generates the greatest possible scientific and societal impact.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2025-04-08
DOI
https://doi.org/10.5281/zenodo.15175225
Primary Topic
Research Data Management Practices
Type
article
Field-Weighted Citation Impact
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article

ECRAID-Base_Deliverable report 9.7_Cloud-based platform for GDPR-compliant actual sharing of multiple data types

Zenodo (CERN European Organization for Nuclear Research)
Research Data Management Practices
article

ECRAID-Base_Deliverable report 9.7_Cloud-based platform for GDPR-compliant actual sharing of multiple data types

article en

Abstract

In this task, we aimed to leverage the infrastructure provided by the Reconciliation of Cohort Data in Infectious Diseases (ReCoDID) project and Versatile Emerging Infectious Disease Observatory (VEO), including the data archives provided by the European Molecular Biology Laboratory's European Bioinformatics Institute (EMBL-EBI) for long-term storage of participant-level data, and ethical and equitable sharing of de-identified participant-level clinical-epidemiological (clin-epi) data and OMICs data from ECRAID-Base perpetual observational studies (POSs). To maximise the utility of ECRAID-Base outputs, ECRAID-Base operates under the maxims ‘As open as possible and as closed as necessary’ and FAIR-by-design. FAIR-by-design is the prospective implementation of the Findable, Accessible, Interoperable and Reusable (FAIR) principles for data and data resources. The FAIR-by-design approach ensures that the universe of ECRAID-Base outputs, including protocols, data management plans (DMPs), informed consent forms (ICFs) and outputs such as datasets, presentations, and publications, are FAIR, which facilitates their reuse through investing in findability, accessibility, and interoperability and allowing for broad reuse of outputs through permissive licences. Identifying and using a cloud-based platform for GDPR-compliant sharing and reusing the POS participant-level data is an integral part of ECRAID-Base’s FAIR-by-design strategy, specifically regarding enabling equitable, ethical data reuse and Open Science, which does not mean open data. We reviewed the trusted digital repositories (TDRs) landscape in Europe and beyond to ensure that EMBL-EBI’s infrastructure for sensitive data reuse was the best option for the long-term preservation and reuse of ECRAID-Base data. The repositories under consideration were evaluated based on their adherence to FAIR principles, data governance policies, metadata catalogues, and compliance with established frameworks evaluating digital preservation resources, including the TRUST principles, among others. This work supports ECRAID-Base’s mission to advance open science, reproducibility, and cross-border research collaborations by establishing a robust governance framework and leveraging established digital infrastructure. These efforts will help ECRAID-Base deliver on their mission to strengthen Europe’s response to emerging infectious diseases and ensure that publicly funded research generates the greatest possible scientific and societal impact.

Zenodo (CERN European Organization for Nuclear Research)
Heidelberg University (DE)
Industry, innovation and infrastructure
Openalex Percentile: Top 40%
Research Data Management Practices
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