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.
AYAs, who are at the core of society and the economy, need access to age-adjusted and high-quality healthcare. AYA care and research will benefit from collection and pooling of patient-centered data and collaboration among all stakeholders: patients, healthcare professionals, scientists, and policymakers. Our consortium includes clinical and scientific leaders in AYA-care, data science and registries, The European Cancer Organisation, Youth Cancer Europe and the European Organisation for Research and Treatment of Cancer (EORTC),building on previous initiatives and EU grants, and merging expertise with innovation.
Within STRONG-AYA, we will set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools that bring, in co-creation with all stakeholders including patients, novel insights into AYA healthcare.