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IDEA4RC at the workshop on rare diseases, global health and social sciences
On 11 May 2023, Claudia Egher, social scientist at the University of Utrecht, presented the work she is conducting within IDEA4RC together with Susan van Hees and Wouter Boon at the workshop ‘Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism’ organized by the Association for Anthropology and Medicine (AGEM). The workshop ‘Rare Diseases,…
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Extending Actor Models in Data Spaces
Simon Dalmolen (TNO) is the co-author of a new paper published in the Companion Proceedings of the ACM Web Conference 2023, which discusses discussing how computers and persons can relate to each other in an early stage regarding consent.
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Co-creation workshop: let’s get started
The objective of the first co-creation workshop is to elicit the main values and concerns the IDEA4RC consortium partners experience in regard to the sharing, use, and re-use of data in the context of establishing a data eco-system for rare cancers. The workshop will take place in Venice at the end of the second consortium…
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The role of real-world data in cancer clinical research
The emergence of the precision medicine paradigm in oncology has led to increasing interest in the integration of real-world data (RWD) into cancer clinical research.
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Second IDEA4RC plenary meeting in Venice
On the 19 and 20 April, IDEA4RC consortium members will meet in Venice for the first time after the beginning of the project. The meeting will be held in the main building of the Università Ca’ Foscari, in the heart of the city. Participants will convene on Wednesday 19 at lunchtime and the meeting will…
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IDEA4RC at ECHNO 2023
Pablo Parente Arias, surgical oncologist at Fundacion Profesor Novoa Sanots, presented IDEA4RC during the 10th European Congress on Head and Neck Oncology that took place in Lisbon from 8 to 11 March 2023 (ECHNO). Here you can find the program of the Congress. Head and neck cancers are one of the two families of rare…
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Data management plan
The Data management plan outlines the framework, procedures, and governance structures for managing health data on rare cancers within the IDEA4RC project, funded by Horizon Europe. You can download the deliverable here.
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Quality plan
The Quality plan describes the procedures established to fulfill the project’s goals, based on a quality-driven framework within which the project will be conducted and implemented. The quality framework incorporates three main dimensions: data quality monitoring, compliance with ethical and legal regulations, and technical quality. This document complements the quality provisions foreseen in the Technical…
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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…
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Communication plan
Communication, dissemination and exploitation activities have the ultimate objective of fostering the progression from the results of the project toward its outcomes. The ultimate aim of IDEA4RC is enabling the re-use of quality health data by researchers in the rare cancers domain and beyond, which is currently undermined by lack of interoperability and by the…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers