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The European Cancer Common Data Model gains momentum
IDEA4RC helped launch the development of a European Cancer Common Data Model to support interoperable cancer research across Europe. The initiative has now reached a major milestone with the completion of its conceptual and logical models. In this interview, Roberta Gazzarata discusses the progress achieved and the next steps ahead.
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IDEA4RC will share lessons learnt in Brussels meeting
IDEA4RC representatives will participate in a meeting organized by the eCREAM consortium and POLHIS – Research Center for the Ethics and Politics of Health Data Ecosystems (University of Milan) together with the European Commission (Directorate-General for research and innovation) to share lessons learnt on innovative solutions developed for the secondary use of EHRs and patient…
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IDEA4RC presents its results at the Madrid Regional Authority
On 23 June 2026, IDEA4RC will host a workshop at the Madrid regional authority to showcase the project’s technical solutions and demonstrate its impact. Invited speakers will offer a broader perspective on the European cancer research landscape and discuss common challenges and potential solutions. You can find the event agenda here.
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IDEA4RC final meeting
As the IDEA4RC project enters its final phase, project partners will gather in Madrid on 24–25 June 2026 for a two-day meeting dedicated to ensuring that the project’s achievements continue to generate impact beyond its formal conclusion.
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One registry, many values: trade-offs in building a rare cancers data infrastructure
C. Egher, S. van Hees, W. Boon, A. Trama and the IDEA4RC Working Group, “One registry, many values: trade-offs in building a rare cancers data infrastructure”, ESMO Rare Cancers, Articles in Press 100520 June 03, 2026. DOI: 10.1016/j.esmorc.2026.100520 Highlights Abstract Background. Investments in the development of innovations for health data sharing and reuse have accelerated.…
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HL7 FHIR Implementation Guide for Rare Cancers
R. Gazzarata, et al, “Developing an HL7 FHIR Implementation Guide for Rare Cancers: The IDEA4RC Project Experience”, Studies in Health Technology and Informatics, Volume 336: Opening the Personal Gate between Technology and Health Care, M. Giacomini et al. (Eds.) (2026). DOI: 10.3233/SHTI260511 abstract Rare cancers data sharing and secondary use are hindered by low incidence,…
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IDEA4RC at MIE2026
On May 26, 2026, Roberta Gazzarata, a biomedical engineer at HL7 Europe and an IDEA4RC member, took part in the 2026 edition of the Medical Informatics Europe conference in Genova. Roberta presented the work done to translate the IDEA4RC data model into a computable FHIR Implementation Guide (more on the use of FHIR for chronic…
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IDEA4RC at HL7 International WGM 2026 in Rotterdam
On May 18, 2026, Roberta Gazzarata, a biomedical engineer at HL7 Europe and an IDEA4RC member, presented the activities around the European Cancer Common Data Model at the HL7 FHIR Connectathon and Working Group Meeting in Rotterdam. Read more about how the work on the the European Cancer Common Data Model began and where it…
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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…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers