The EU-funded project ‘Intelligent Ecosystem to improve the governance, the sharing and the re-use of health Data for Rare Cancers’ (IDEA4RC) aims to establish a Data Space for rare cancers (RC) to enable access to existing health data from different sources and to make it possible their re-use. These data will include information from cancer registries, national registries, data from biobanks, etc., across European healthcare systems, leveraging emerging interoperability technologies and AI approaches. The realized “Rare Cancer Data Ecosystem” is expected to improve the quality and the organization of RC patients care, and to increase knowledge on rare cancers advancing health research, so that all patients have equal access to high quality specialist care.

The project approach will be experienced in the framework of the European reference network for rare adult solid cancers (EURACAN).

Within the project, Alliance Against Cancer is an Affiliated Entity to DIGICORE (DIGital Institute for Cancer Outcomes REsearch). ACC coordinates Work Package 10 – “Rare Cancer Data Ecosystem enlargement and liaison”. The objective of WP10 is the enlargement of the Data Ecosystem through the creation of a Community of Interest with a number of strategic stakeholders’ categories. This enlargement will be pursued initially by involving all the centres of the EURACAN Network, then exploring the possibility to involve other centres – both as contributors and as users of the database – and other categories of stakeholders – primarily patients, citizens, professionals – who may benefit from the Data Ecosystem.