ArticleDigital health
An innovative technological infrastructure for managing SARS-CoV-2 data across different cohorts in compliance with General Data Protection Regulation.
Article in Digital health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed.
- Characteristics of cohort data management systems (CDMS): a scoping review.BMC medical research methodology · 2025Article
- Federated systems for automated infection surveillance: a perspective.Antimicrobial resistance and infection control · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: The ORCHESTRA project, funded by the European Commission, aims to create a pan-European cohort built on existing and new large-scale population cohorts to help rapidly advance the knowledge related to the prevention of the SARS-CoV-2 infection and the management of COVID-19 and its long-term sequelae. The integration and analysis of the very heterogeneous health data pose the challenge of building an innovative technological infrastructure as the foundation of a dedicated framework for data management that should address the regulatory requirements such as the General Data Protection Regulation (GDPR). Methods: The three participating Supercomputing European Centres (CINECA - Italy, CINES - France and HLRS - Germany) designed and deployed a dedicated infrastructure to fulfil the functional requirements for data management to ensure sensitive biomedical data confidentiality/privacy, integrity, and security. Besides the technological issues, many methodological aspects have been considered: Berlin Institute of Health (BIH), Charité provided its expertise both for data protection, information security, and data harmonisation/standardisation. Results: The resulting infrastructure is based on a multi-layer approach that integrates several security measures to ensure data protection. A centralised Data Collection Platform has been established in the Italian National Hub while, for the use cases in which data sharing is not possible due to privacy restrictions, a distributed approach for Federated Analysis has been considered. A Data Portal is available as a centralised point of access for non-sensitive data and results, according to findability, accessibility, interoperability, and reusability (FAIR) data principles. This technological infrastructure has been used to support significative data exchange between population cohorts and to publish important scientific results related to SARS-CoV-2. Conclusions: Considering the increasing demand for data usage in accordance with the requirements of the GDPR regulations, the experience gained in the project and the infrastructure released for the ORCHESTRA project can act as a model to manage future public health threats. Other projects could benefit from the results achieved by ORCHESTRA by building upon the available standardisation of variables, design of the architecture, and process used for GDPR compliance.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.