IDEA4RC

Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers

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  • Standards for a rare cancer data ecosystem

    This deliverable reports on the standards essential for the enlargement of the IDEA4RC ecosystem. It details the activities carried out to analyse the context and initiate a process to harmonise ecosystem standards. This included continuous monitoring of the relevant landscape emerging from each core technical work package, to ensure that all tools and infrastructure components…

  • Ethics guidelines for enlargement

    This deliverable focuses on one primary aspect of the IDEA4RC project: ethical requirements for enlargement, drawing and building upon the results of deliverable Ethical data governance. Based it considers the results of the evolution of ethical and normative issues arising within IDEA4RC in order to best design post-project activities.

  • IDEA4RC data model

    This deliverable introduces the work done on the data quality metadata and the common data models for head and neck cancers and sarcomas within the IDEA4RC project. At the start of the project, it soon became apparent that existing oncological data models, such as OMOP, OSIRIS, and mCODE, presented significant limitations for our scopes. While…

  • Specification of the multimodal data navigator

    This deliverable outlines the comprehensive approach taken to design and implement the Multimodal Data Navigator, ensuring it meets the needs of diverse stakeholders and adheres to the FAIR principles (Findability, Accessibility, Interoperability, and Reusability).

  • Pilot projects plan

    This deliverable outlines a comprehensive deployment plan for the IDEA4RC pilot projects focused on rare cancer epidemiology. The primary goal is to enable secure, privacy-preserving environments that facilitate the secondary use of structured and unstructured data across several federated Centres of Excellence (CoEs). IDEA4RC deployment covers the implementation of advanced technologies such as Natural Language…

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    Pilot data governance

    This deliverable 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 centres involved in IDEA4RC. Pilot projects are case studies which will serve to test the IDEA4RC ecosystem. They will be selected among the research questions that rare…

  • Metadata Taxonomy

    This deliverable presents quality metadata and the head and neck cancers common data model that will be adopted within IDEA4RC.

  • 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…

  • 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…

  • 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.