Periodic Reporting for period 2 - STRONG-AYA (THE STRONG-AYA INITIATIVE: IMPROVING THE FUTURE OF YOUNG ADULTS WITH CANCER)
Reporting period: 2024-04-01 to 2025-09-30
The STRONG-AYA project is a multi-stakeholder European network that aims to improve healthcare services, research, and outcomes for Adolescents and Young Adults (AYA) with cancer. AYAs with cancer face age-specific issues and decreased quality of life due to cancer and its treatment. Unlike pediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. As a result, AYA-care and research will benefit from the collection and pooling of patient-centered data and collaboration among all stakeholders: patients, healthcare professionals, scientists, and policymakers.
The overall objectives of the project are to 1) develop a Core Outcome Set (COS) for AYAs with cancer, 2) implement the COS in five countries (local ecosystems) using an innovative privacy preserving pan-European data ecosystem which keeps patient data at the hospital that holds it but allows permitted users to ask questions of the data for outcome data management and clinical decision-making. The data, from heterogenous sources, is harmonized and made findable, accessible, interoperable and reusable for long term data sustainability. This pan-European ecosystem welcomes future European countries and facilitates interactions between local, regional, national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes. The project also intends to improve the reporting and assessment of outputs towards policymakers.
The project's scale and significance lie in addressing the lack of AYA-specific healthcare services using a technically innovative infrastructure across Europe to improve the quality of life of AYAs with cancer. The project aims to provide policymakers with novel insights into AYA healthcare and set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools in co-creation with all stakeholders, including patients.
The project involves a consortium of clinical and scientific leaders in AYA-care, data science and registries, policy makers such as the European Cancer Organisation, patient advocates like Youth Cancer Europe, and the EORTC. As an interdisciplinary project, STRONG AYA recognizes the importance of an interdisciplinary team. The project's emphasis on stakeholder engagement and co-creation highlights the role of social sciences and humanities in addressing the social and economic challenges that AYAs with cancer face.
The overall objectives of the project are to 1) develop a Core Outcome Set (COS) for AYAs with cancer, 2) implement the COS in five countries (local ecosystems) using an innovative privacy preserving pan-European data ecosystem which keeps patient data at the hospital that holds it but allows permitted users to ask questions of the data for outcome data management and clinical decision-making. The data, from heterogenous sources, is harmonized and made findable, accessible, interoperable and reusable for long term data sustainability. This pan-European ecosystem welcomes future European countries and facilitates interactions between local, regional, national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes. The project also intends to improve the reporting and assessment of outputs towards policymakers.
The project's scale and significance lie in addressing the lack of AYA-specific healthcare services using a technically innovative infrastructure across Europe to improve the quality of life of AYAs with cancer. The project aims to provide policymakers with novel insights into AYA healthcare and set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools in co-creation with all stakeholders, including patients.
The project involves a consortium of clinical and scientific leaders in AYA-care, data science and registries, policy makers such as the European Cancer Organisation, patient advocates like Youth Cancer Europe, and the EORTC. As an interdisciplinary project, STRONG AYA recognizes the importance of an interdisciplinary team. The project's emphasis on stakeholder engagement and co-creation highlights the role of social sciences and humanities in addressing the social and economic challenges that AYAs with cancer face.
WP1: Development of a Core Outcome Set and data collection
The project has successfully developed a core outcome set (COS) for AYAs via a consensus process. This COS was implemented at all seven clinical centres via a data ecosystem As of November 2025, data collection is underway at all seven centres, and six of them have applied the COS to retrospective data from previous studies, registries and the electronic patient record to create a cohort of over 22,000 patients. Prospective data collection is underway at four of six centres able to collect it.
WP2: Governance, data privacy and ethics
The project has successfully implemented a data access agreement (DAA), compliant with local and European legislation (GDPR), and after conducting a data protection impact assessment. Ethical and legal scholars are also considering how we might be able to automate data user frameworks like PLUTO and consider dynamic consent.
WP3: Infrastructure and interoperability
STRONG AYA utilizes a federated data infrastructure to preserve patient privacy at the individual level. In this infrastructure, patient data never leaves the hospital.
WP4: Operation of STRONG-AYA ecosystems, Stakeholder and Patient involvement, Dissemination, Exploitation, Communication
STRONG AYA has successfully established and operationalized its data ecosystem at both the local and international levels to allow its users, including patients, to ask questions of the STRONG AYA data. STRONG AYA expertise in policy, stakeholder engagement and patient advocacy has led to the successful engagement of stakeholders via a Stakeholder Forum, active patient engagement that utilizes patient experience and expertise beyond their diagnosis, and alignment with other emerging AYA initiatives across Europe.
More information, including news, deliverables, publications and sign up for our newsletter is available at www.strongaya.eu
The project has successfully developed a core outcome set (COS) for AYAs via a consensus process. This COS was implemented at all seven clinical centres via a data ecosystem As of November 2025, data collection is underway at all seven centres, and six of them have applied the COS to retrospective data from previous studies, registries and the electronic patient record to create a cohort of over 22,000 patients. Prospective data collection is underway at four of six centres able to collect it.
WP2: Governance, data privacy and ethics
The project has successfully implemented a data access agreement (DAA), compliant with local and European legislation (GDPR), and after conducting a data protection impact assessment. Ethical and legal scholars are also considering how we might be able to automate data user frameworks like PLUTO and consider dynamic consent.
WP3: Infrastructure and interoperability
STRONG AYA utilizes a federated data infrastructure to preserve patient privacy at the individual level. In this infrastructure, patient data never leaves the hospital.
WP4: Operation of STRONG-AYA ecosystems, Stakeholder and Patient involvement, Dissemination, Exploitation, Communication
STRONG AYA has successfully established and operationalized its data ecosystem at both the local and international levels to allow its users, including patients, to ask questions of the STRONG AYA data. STRONG AYA expertise in policy, stakeholder engagement and patient advocacy has led to the successful engagement of stakeholders via a Stakeholder Forum, active patient engagement that utilizes patient experience and expertise beyond their diagnosis, and alignment with other emerging AYA initiatives across Europe.
More information, including news, deliverables, publications and sign up for our newsletter is available at www.strongaya.eu
The development and implementation of a Core Outcome Set (COS) for AYAs with cancer is crucial in facilitating efficient and relevant standard data collection from a heterogenous and underserved population. This data is collected via in innovative federated learning data infrastructure, which creates a privacy preserving and futureproofed ecosystem that is intended to be compatible with the emerging European Health Data Space. By harmonizing data and making it FAIR, STRONG AYA will increase the long term utility of these data for patients, researchers, healthcare professionals, and policymakers, ultimately improving the value of care for underserved young cancer patients. The ability to apply the COS both retrospectively and prospectively ensures that previously collected data remains valuable and can be made interoperable and reusable.
The STRONG AYA project will play a significant role in transforming AYA healthcare systems and research outcomes. The project will create opportunities for AYA health outcomes research and the utilization of outcomes data at both national and European levels, and in doing so bring together all stakeholders and integrate age-specific AYA care into existing health care. This transformation will be beneficial to all parties involved.
In essence, STRONG AYA will establish a European network for AYA cancer that lays the foundation for building AYA value-based healthcare across Europe. The project will be a catalyst for the transformation of AYA health outcomes data usage, resulting in a win-win situation for all stakeholders.
The STRONG AYA project will play a significant role in transforming AYA healthcare systems and research outcomes. The project will create opportunities for AYA health outcomes research and the utilization of outcomes data at both national and European levels, and in doing so bring together all stakeholders and integrate age-specific AYA care into existing health care. This transformation will be beneficial to all parties involved.
In essence, STRONG AYA will establish a European network for AYA cancer that lays the foundation for building AYA value-based healthcare across Europe. The project will be a catalyst for the transformation of AYA health outcomes data usage, resulting in a win-win situation for all stakeholders.