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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…
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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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Fifth IDEA4RC plenary meeting
IDEA4RC project members will gather in Rome on November 21-22 for the fifth consortium meeting, hosted by ENG Ingegneria Informatica Spa. The meeting will be the occasion to show demos of the various software components that will constitute the IDEA4RC data space and share the status and next of the data preparation activities. IDEA4RC members…
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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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Specification of the multimodal data navigator
This deliverable outlines the comprehensive approach taken to design and implement the Multimodal Data Navigator, ensuring it meets the needs of diverse stakeholders and adheres to the FAIR principles (Findability, Accessibility, Interoperability, and Reusability).
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers