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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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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…
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IDEA4RC webinar series
The IDEA4RC project is developing innovative solutions to create a health data ecosystem on rare cancers. To find out more, join our webinar series: IDEA4RC partners wish to engage in an open dialogue with a wide and diverse group of stakeholders. Whether you are a researcher, a clinician, a software engineer, a patient advocate, a…
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IDEA4RC at Connect To Win 2024
On November 26th, 2024, Annalisa Trama, epidemiologist at the National Cancer Institute of Milan and IDE4RC coordinator, participated in the annual meeting of the DIGital Institute for Cancer Outcome REsearch (DigiCore), Connect To Win, which was held in Utrecht. Trama presented IDEA4RC activities as a part of the DigiCore Real-World Evidence (RWE) projects. They include:
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IDEA4RC at MIE24
IDEA4RC members participated in the 34th Medical InformaticsEurope Conference (MIE 24) that was held in Athens from August 25th to 29th. The theme of the congress was “Digital Health and Informatics Innovations for Sustainable Health Care Systems”. On August 27th, IDEA4RC partners held the workshop “Towards a European Cancer Minimum Data Model and European Oncology…
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IDEA4RC at EASST4S2024
On July 16th 2024, Claudia Egher, researcher at Utrectht University, presented the work done so far in IDEA4RC together with Susan van Hees and Wouter Boon during the panel “Unexpected ways of knowledge production. Spaces for co-creation in Research Infrastructures” at the quadrennial joint meeting of the European Association for the Study of Science and…
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IDEA4RC launches its Community of Interest starting from patients
Since the inception of IDEA4RC, the involvement of a large and diverse group of stakeholders has been deemed crucial for the success of the project. Values and expectations of people who can benefit from the IDEA4RC data ecosystem have been considered through focus groups and interviews, but now, as the platform begins to take shape,…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers