STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network aiming to improve healthcare services, research and outcomes for Adolescents and Young Adults (AYA) with cancer aged 15-39 years at cancer diagnosis.
AYAs with cancer form a unique group; they face age-specific issues (e.g. infertility, unemployment, financial problems) and decreased quality of life due to cancer and its treatment. Unlike dedicated healthcare and trials for pediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe.
The specific objectives of the project include: (1) Development of a Core Outcome Set (COS) for AYAs with cancer; 2) Implementation of the COS in five national healthcare systems (France, Italy, Netherlands, United Kingdom, Poland) and establishment of national infrastructures for outcome data management and clinical decision-making and a pan-European ecosystem; 3) Dissemination of outcomes and facilitation of interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes, establish feedback loops for AYA cancer patients and the healthcare systems, and improve the reporting and assessment of outputs towards policy-makers.
STRONG-AYA is funded by the European Union (Grant Agreement 101057482) and by Innovate UK (10038931, 10039273, 10041045, 10044189).
