Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers


  • Third IDEA4RC plenary meeting in Madrid

    The third plenary meeting will take place in Madrid on 22 and 23 November 2023, at the Universidad Politécnica de Madrid. At the end of the meeting participants will be involved in the scenario validation workshop.

  • 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.

  • IDEA4RC goes to MEDICON’23

    For the first time two long running conferences on medical and biological engineering will take place in combination in Sarajevo, Bosnia Herzegovina, from 14 to 16 September 2023. They are the Mediterranean Conference on Medical and Biological Engineering and Computing (MEDICON) and the International Conference on Medical and Biological Engineering in Bosnia and Herzegovina (CMBEBIH).…

  • Hot takes from the second consortium meeting in Venice

    IDEA4RC members met for the second time on 19 and 20 April 2023 in Venice. It was an opportunity to share the results of active working groups and agree on next steps. The main objective of the first year of the project is the ecosystem conception, and it is carried out by Working Package 2…

  • 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…

  • IDEA4RC goes to IFHNOS 2023

    The Internatioanl Federation of Head and Neck Oncologic Societies will hold its 7th World Congress (IFHNOS 2023) from 21 to 25 June in Rome. Three members of IDEA4RC will take part in it: Annalisa Trama, cancer epidemiologist at Istituto Nazionale dei Tumori and project coordinator, Lisa Licitra, medical oncologist specialized in head and neck cancers…

  • IDEA4RC at the workshop on rare diseases, global health and social sciences

    On 11 May 2023, Claudia Egher, social scientist at the University of Utrecht, will be presenting the work she is conducting within IDEA4RC together with Susan van Hees and Wouter Boon at the workshop ‘Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism’ organized by the Association for Anthropology and Medicine (AGEM). You can…