-
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…
-
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…
-
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…
-
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,…
-
Stakeholder engagement plan
The stakeholder engagement plan has two main objectives. First, promoting the IDEA4RC data ecosystem among clinical centers to enlarge its adoption. Second, creating a community of interest that includes a wider range of subjects, such as health professionals, patients’ organizations, data protection, health authorities and pharmaceutical companies in order to gather feedbacks on the platform…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers