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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…
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Ethics guidelines for enlargement
This deliverable focuses on one primary aspect of the IDEA4RC project: ethical requirements for enlargement, drawing and building upon the results of deliverable Ethical data governance. Based it considers the results of the evolution of ethical and normative issues arising within IDEA4RC in order to best design post-project activities.
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IDEA4RC data model
This deliverable introduces the work done on the data quality metadata and the common data models for head and neck cancers and sarcomas within the IDEA4RC project. At the start of the project, it soon became apparent that existing oncological data models, such as OMOP, OSIRIS, and mCODE, presented significant limitations for our scopes. While…
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A European common data model for cancer
IDEA4RC aims at building a rare cancer data space that facilitates re-using data collected in clinical settings to advance research on these diseases. A core challenge in this endeavour is that of defining a minimal set of clinical concepts to include in the data space and determining how to logically connect these concepts- this is…
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Hot takes from the fifth consortium meeting in Rome
IDEA4RC members gathered in Rome on 21 and 22 November for the fifth consortium meeting, which was held at the headquarters of ENG, Engineering Ingegneria Informatica. Now we need data! “Over the last two years we learned how to work together, and found a common language”, said Annalisa Trama, epidemiologist at the National Cancer Institute…
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How IDEA4RC is contributing to the EURACAN Registry – a webinar for patients
On December 4, 2024, the European Patient Advocacy Groups of the EURACAN network participated in a webinar about IDEA4RC’s contributions to the EURACAN registry. The session featured Annalisa Trama, an epidemiologist at the National Cancer Institute of Milan and the coordinator of both the IDEA4RC project and the EURACAN registry. The EURACAN registry began in…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers