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Four years of IDEA4RC: lessons learned and what comes next
Annalisa Trama reflects on IDEA4RC’s journey and the future of rare cancer data in Europe.
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Presenting IDEA4RC to the Community of Madrid
On Tuesday 23 June, IDEA4RC brought researchers, clinicians, policymakers and innovators together at the Ministry for Digitalization of the Community of Madrid for a public session on how health data can be securely reused for research and better patient care.
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Inside IDEA4RC’s Final Plenary in Madrid
At the end of June, the IDEA4RC consortium gathered in Madrid for its final plenary meeting ahead of the project’s review this autumn. Hosted by the Universidad Politécnica de Madrid (UPM), the two-day meeting brought together the eleven clinical centres and technical partners that, over four years, have worked to build a federated platform for…
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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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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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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…
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Unlocking rare cancer data: using large language models to extract information from clinical notes
One of the main objectives of the IDEA4RC project is to develop an algorithm capable of extracting data from clinicians’ notes and pathology or radiology reports stored within the hospital’s information system. Currently, a wealth of information is locked within these texts, which cannot be fully utilized by researchers to uncover more about rare cancers,…
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Federated learning in health research: interview with Frank Martin
In building its rare cancers ecosystem, IDEA4RC is following a federated learning approach. This means that the data of each clinical centre participating in a specific research study will not leave the centre. Instead, the results of the analysis on each centre’s data will be communicated to a central server, where they will be combined…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers