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Policy makers, researchers and patients
Policy makers, researchers, patients Who can support disseminate and help anchor IDEA4RC’s work beyond the scope of EU grant. Conducting research on rare cancers is difficult because data are scarce and scattered across several clinical centres. Researchers would benefit from being able to analyse data collected by many of them, but this is challenging due…
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Clinical centres
Clinical Centres Willing to contribute data securely and join a European network that makes rare cancer information visible and comparable. Conducting research on rare cancers is difficult because data are scarce and scattered across several clinical centres. Researchers would benefit from being able to analyse data collected by many of them, but this is challenging…
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Health tech companies
Health tech companies Interested in exploring, integrating or adopting the tools developed within the project, bringing them closer to real-world application and sustainability Conducting research on rare cancers is difficult because data are scarce and scattered across several clinical centres. Researchers would benefit from being able to analyse data collected by many of them, but…
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Watch IDEA4RC at Vitalis 2025
The IDEA4RC project participated in Vitalis 2025, the leading eHealth event in Scandinavia, taking place in Gothenburg from May 19 to 22. Project partners presented ongoing work and share insights into the solutions being developed to support the secondary use of health data for rare cancers research and care. On May 19th, 15:00-17:00, Annalisa Trama…
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In a father’s story, all the reasons to pursue IDEA4RC
There was a time, a happy time, when I didn’t know what sarcoma was. There was a time I’d never even heard the word. That time ended suddenly in May 2015 when a doctor said to my 18-year-old daughter “You have a rare cancer in the blood vessels. It’s called angiosarcoma. It’s very rare and…
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IDEA4RC at Vitalis 2025
The IDEA4RC project is participating in Vitalis 2025, the largest eHealth event in Scandinavia, taking place in Gothenburg from May 19 to 22. Project partners will present ongoing work and share insights into the solutions being developed to support the secondary use of health data for rare cancers research and care. On May 19th, 15:00-17:00,…
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IDEA4RC at HL7 International WGM 2025 in Madrid
On May 13, 2025, Roberta Gazzarata, a biomedical engineer at HL7 Europe and an IDEA4RC member, led the “European Cancer Model” track at the Health Level Seven International Working Group Meeting in Madrid. During the session, Roberta and other speakers successfully completed the first candidate version of the “European Cancer Common Conceptual Data Model.” This…
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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…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers