IDEA4RC

Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers

admin-IDEA4RC

  • 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…

  • Co-creation workshop: let’s get started

    The objective of the first co-creation workshop is to elicit the main values and concerns the IDEA4RC consortium partners experience in regard to the sharing, use, and re-use of data in the context of establishing a data eco-system for rare cancers. The workshop will take place in Venice at the end of the second consortium…

  • Second IDEA4RC plenary meeting in Venice

    On the 19 and 20 April, IDEA4RC consortium members will meet in Venice for the first time after the beginning of the project. The meeting will be held in the main building of the Università Ca’ Foscari, in the heart of the city. Participants will convene on Wednesday 19 at lunchtime and the meeting will…

  • Data management plan

    You can download the data management plan here.

  • 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…

  • 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…

  • 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…

  • IDEA4RC goes to ECHNO 2023

    Pablo Parente Arias, surgical oncologist at Fundacion Profesor Novoa Sanots, will present IDEA4RC during the 10th European Congress on Head and Neck Oncology that will take 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…