The twelfth issue of the IDEA4RC newsletter
Hello,
In this newsletter, we interview Roberta Gazzarata, a biomedical engineer at HL7 Europe and a member of the IDEA4RC consortium, about the effort the project is putting towards the development of a European common data model for cancer. Gazzarata explains how this idea grew out of the work on the IDEA4RC data model and outlines the next steps in the process.
If you missed issue #10, in which we first introduced this topic, you can find it here.
We also announce IDEA4RC final meeting, and a workshop that will be held in the Madrid Region to showcase the project’s solutions, as well as the latest conferences and publications
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The European Cancer Common Data Model gains momentum |
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IDEA4RC played an instrumental role in launching the development of a European Cancer Common Data Model. The goal is to define a core set of clinical concepts shared across all types of cancer, providing a common foundation for cancer research in Europe. Since its launch in February 2025, the effort has reached a major milestone with the delivery of the conceptual and logical versions of the model, developed with contributions from European and national cancer registries. Major European cancer projects, such as CANDLE and UNCAN, have expressed interest in adopting the model and contributing to its extension. Now formally coordinated by HL7 Europe, the initiative plans to engage with the international cancer data model community to explore the development of a globally harmonized model. At the same time, discussions have begun with several international standardization communities to broaden the scope of the initiative beyond Europe. We asked Roberta Gazzarata of HL7 Europe, who leads the initiative, to share the latest developments and discuss the next steps, including how the work will continue beyond IDEA4RC.
Here are our questions.
Roberta, where do we stand now?
Why does better data reuse start with better data collection?
Who has contributed to this journey so far?
What has been the impact of the initiative on other European projects?
Do you plan to involve additional stakeholders?
What was the role of IDEA4RC in launching this initiative?
What are the next steps?
Read all the answers here.
Meetings, results
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On June 23, 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. The agenda is available here. |
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The IDEA4RC final meeting will be held in Madrid on June 24-25, 2026. As the project enters its final phase, the meeting will be an opportunity to ensure that the project’s achievements continue to generate impact beyond its formal conclusion. The agenda is available here. |
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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 learned on innovative solutions developed for the secondary use of EHRs and patient registries in multi-national research projects. The meeting will take place in Brussels on June 29, 2026. Further details are available here. |
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A new paper published in ESMO Rare Cancers journal explores the value tensions that shape the design and governance of rare cancers data ecosystems. The study highlights how data sharing is influenced by the need to balance solidarity and competition, shared goals and institutional autonomy, as well as efficiency and data quality. Claudia Egher and co-authors also show how co-creation processes can help align priorities among stakeholders and support the long-term sustainability of rare cancers data sharing and reuse. The paper is available here. |
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During the HL7 International Working Group Meeting, held in Rotterdam from May 18 to 22, 2026, Roberta Gazzarata presented the work on the European Cancer Common Data Model. Further details are available here, and the associated paper can be downloaded here. |
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On May 26, 2026, Roberta Gazzarata presented the work carried out to develop the IDEA4RC data model FHIR Implementation Guide during the Medical Informatics Europe conference in Genoa. Further details are available here. |
