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Pilot data governance
The deliverable “Pilot Data Governance” details the work done so far by the consortium to identify the legal and ethical requirements needed to deploy the pilot projects across the 11 clinical centers involved in IDEA4RC. Pilot projects are case studies which will serve to test the IDEA4RC ecosystem. They will be selected among the research…
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Metadata Taxonomy
This deliverable presents quality metadata and the head and neck cancers common data model that will be adopted within IDEA4RC.
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Data Ecosystem reference architecture
This deliverable is divided in two parts. The first one contains a state-of-the-art analysis of security and privacy requirements for health data sharing and re-use and a corresponding state-of-the-art analysis of technologies and architectural approaches that can satisfy those requirements. The second part focuses on the IDEA4RC ecosystems and outlines the architectural choices that will…
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Ethical data governance
This deliverable offers a first version of the data governance model for the IDEA4RC data ecosystem. It is based on the analysis of the ethical and legal requirements for the secondary use of health data within the European Union, from which a set of guidelines that fulfil the principles of Ethics by Design and by…
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Data ecosystem value analysis and scenarios
This deliverable identifies the values and positions of the IDEA4RC stakeholders at the start of the project and traces the steps to follow their evolution in time. Based on starting values and positions it formulated three possible implementation scenario for IDEA4RC.
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Pilot projects selection
IDEA4RC aims to develop a federated data ecosystem for rare adult solid cancers focusing on two groups of these cancers: soft tissue sarcomas and head and neck cancers. The ecosystem will be tested through measures of quality, usefulness, usability, and efficiency, collected in real world use cases. This deliverable provides a description of the research…
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Data management plan
You can download the data management plan here.
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Quality plan
This Quality Manual describes the procedures established to fulfill the project’s goals based on a quality-driven framework within which the project will be conducted and implemented. The quality framework incorporates three main dimensions: data quality monitoring, compliance to ethical and legal regulations and technical quality. This document complements the quality provisions foreseen in the Technical…
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Stakeholder engagement plan
The stakeholder engagement plan has two main objectives. First, promoting the IDEA4RC data ecosystem among clinical centers to enlarge its adoption. Second, creating a community of interest that includes a wider range of subjects, such as health professionals, patients’ organizations, data protection, health authorities and pharmaceutical companies in order to gather feedbacks on the platform…
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Communication plan
Communication, dissemination and exploitation activities have the ultimate objective of fostering the progression from the results of the project toward its outcomes. The ultimate aim of IDEA4RC is enabling the re-use of quality health data by researchers in the rare cancers domain and beyond, which is currently undermined by lack of interoperability and by the…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers