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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 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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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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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…
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Impact of HL7 FHIR in digital healthcare ecosystems for chronic disease management
Reviewing the scientific and gray English literature from 2017 to 2023, the authors ended up with 93 scientific papers on the employment of HL7 FHIR for chronic disease management and 35 HL7 FHIR Implementation Guidelines on the same topic. They concerned primarily cancer (45%) cardiovascular diseases (more than 15%) and diabetes (almost 15%). Articles come…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers