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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…
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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…
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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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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…
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Extending Actor Models in Data Spaces
Simon Dalmolen (TNO) is the co-author of a new paper published in the Companion Proceedings of the ACM Web Conference 2023, which discusses discussing how computers and persons can relate to each other in an early stage regarding consent.
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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…
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The role of real-world data in cancer clinical research
The emergence of the precision medicine paradigm in oncology has led to increasing interest in the integration of real-world data (RWD) into cancer clinical research.
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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…
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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…
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Data management plan
You can download the data management plan here.
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers