EUonQoL aims to develop, pilot and validate the EUonQoL-Kit, a patient-driven, unified system for the assessment of quality of life (QoL) based on evaluations and preferences of cancer patients and survivors. The EUonQoL-Kit will be developed from a patient perspective, administered digitally, available in the EU27 and Associated countries languages, and applicable in future, periodic surveys to contribute to the EU’s mission on cancer. At the core of the EUonQoL there is the adoption of a multistakeholder, co-design methodology, engaging patient representatives, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Existing QoL tools will be reviewed, scoping all relevant sources. This review will be used in the context of the codesign consensus with stakeholders’ and patients’ preferences to identify gaps and establish all QoL dimensions that are relevant from the perspectives of patients, clinicians, and society. A multidisciplinary researcher panel, composed by the most talented experts, will develop the EUonQoL-Kit that will be validated in a pilot survey using digital data collection within month 24 of the project. A total of 4,000 cancer patients and survivors will be enrolled through a network of EU cancer centers. An analysis of factors potentially impacting on cancer patients and survivors QoL, will also be performed. Implementation and exploitation strategies, as well as the linkage with other Cancer Mission projects and actions will be explored to develop future periodic surveys. EUonQoL is composed by research institutions, cancer centers, as well as scientific, professional, and patient representative organizations involved in cancer research, all with extensive experience and robust scientific background in the development of self-report QoL measures.This partnership fuels the ambition of EUonQoL to translate QoL information into future changes in cancer care policy and clinical practice.

The main objective of this project is to establish a Data Space for rare cancers (RC) that will make possible the re-use of existing multisource health data (cancer registry data, 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).

Cancer is the second leading cause of death in Europe with an expected increase of about 25% by 2035. A wide and unacceptable variability in terms of access to research, innovation and quality care exists between and within countries. Possible solutions are an increase in knowledge by funding research, and a more equitable transfer of what we already know to everyone. Comprehensive Cancer Centers and Comprehensive Cancer Care Networks may be the core of CCIs that deliver quality care and provide resources to improve and integrate care, research and education. Data already available confirm that the level of "CCI maturity" in Member States is widely different, from some countries lacking CCIs completely. A European initiative, implemented in all Member States, based on a capacity building programme (CBP), will help reduce inequalities, in the context of other actions ongoing, such as CRANE, JANE and UNCAN. CBP is a complex intervention that requires multiple and integrated actions delivered to all the relevant stakeholders. CBP will be designed with an inclusive approach, tailored to the baseline status, capable of creating a change and improvement in research and care, with greater integration between them, supported by an education programme. It will operate at various levels: Individuals, Institutions and Systems. The CSA will implement the following steps: define CCI Maturity Model including quality indicators; profile the CCIs in each MS and a few ACs in terms of CCI presence and levels of maturity; design tailored CBP interventions, giving priority to MSs without any CCI; deliver online training courses open to teams in all MSs and ACs, implement targeted onsite interventions; scale up and sustain development; disseminate, exploit and report results. The CSA will maximize impact by bridging with the work of ongoing EU cancer research projects. National focal points will be key informants in making the links between the CSA, the EC and MSs.