Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers


  • IDEA4RC at RARE2023

    IDEA4RC will be presented in the poster session of the The 5th International Conference on Rare Diseases, which will be held in Budapest on 30 November and 1 December 2023.

  • 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.


    Laura López Pérez, biomedical engineer at the Polytechnic University of Madrid in the LifeSTech group, presented IDEA4RC on Friday 15 September during the 2023 Mediterranean Conference on Medical and Biological Engineering (MEDICON’23). This year the conference has been organized together with the International Conference on Medical and Biological Engineering in Bosnia and Herzegovina (CMBEBIH). The…

  • IDEA4RC at IFHNOS 2023

    The Internatioanl Federation of Head and Neck Oncologic Societies held its 7th World Congress (IFHNOS 2023) from 21 to 25 June 2023 in Rome. Three members of IDEA4RC took 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 at…

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

    On 11 May 2023, Claudia Egher, social scientist at the University of Utrecht, presented 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 download the…

  • IDEA4RC at ECHNO 2023

    Pablo Parente Arias, surgical oncologist at Fundacion Profesor Novoa Sanots, presented IDEA4RC during the 10th European Congress on Head and Neck Oncology that took place in Lisbon from 8 to 11 March 2023 (ECHNO). Here you can find the program of the Congress. Head and neck cancers are one of the two families of rare…