STRONG-AYA: THE STRONG-AYA INITIATIVE: IMPROVING THE FUTURE OF YOUNG ADULTS WITH CANCER

STRONG-AYA是一个新的跨学科、多利益相关者的欧洲网络，旨在为15-39岁的癌症诊断患者(青少年和青年)改善医疗服务、研究和结果。Aya癌症患者是一个独特的群体；他们面临特定年龄的问题(如不孕不育、失业、经济问题)，以及因癌症及其治疗而导致的生活质量下降。与为儿科癌症患者提供专门的医疗保健和研究不同，针对Aya的医疗保健服务很少，而且在欧洲各地各不相同。处于欧洲社会和经济核心的阿亚需要获得以证据为基础、年龄调整的高质量医疗保健。AYA护理和研究将受益于收集和利用以患者为中心的数据，与临床和医疗服务数据整合，以及所有利益相关者之间的广泛合作：患者、医疗保健专业人员、研究人员和医疗保健政策制定者。我们的联盟(Aya-CARE的临床和科学领导者、数据科学家和癌症注册机构、欧洲癌症组织和欧洲青年癌症患者和政策倡导者，以及专家研究伦理和监管国际研究组织，如EORTC)将与以前和其他正在进行的倡议和欧盟资助建立起来。在Strong-Aya内，我们将建立一个基于价值的医疗研究生态系统，以开发数据驱动的、互动的政策和可视化工具，与所有利益相关者(包括患者)共同创建，为Aya医疗带来新的见解。项目目标包括：1)为AYA癌症患者开发核心结果集(COS)；2)在5个国家医疗保健系统(FR、IT、NL、UK、PL)实施COS，并在临床决策、研究和卫生政策中使用结果数据的国家基础设施。然后，泛欧洲生态系统将利用这些国际数据，欢迎未来的欧洲国家；3)传播结果并促进各国和泛欧洲利益攸关方之间的互动，以开发分析工具，向所有利益攸关方展示相关结果，为Aya癌症患者、医疗保健系统和政策制定者创建反馈循环。

STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for individuals aged 15-39 years at cancer diagnosis (Adolescents and Young Adults; ‘AYA’). AYA 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 research for paediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. AYA, who are at the core of European society and economy, need access to evidence-based age-adjusted high-quality healthcare. AYA care and research will benefit from collection and utilisation of patient-centred data integrated with clinical and health service data and wide collaboration among all stakeholders: patients, healthcare professionals, researchers, and healthcare policymakers. Our consortium (clinical and scientific leaders in AYA-care, data scientists and cancer registries, European Cancer Organisation and Youth Cancer Europe patient and policy advocates, and expert research ethical and regulatory international research organisations such as EORTC) will build with previous and other ongoing initiatives and EU grants.Within STRONG-AYA we will 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) that bring novel insights into AYA healthcare.The project objectives, include: 1) Development of a Core Outcome Set (COS) for AYAs with cancer; 2) Implementation of the COS in 5 national healthcare systems (FR, IT, NL, UK, PL) with national infrastructures for outcome data utilisation in clinical decision-making, research and health policy. Then a pan-European ecosystem will utilise this international data and welcome future European countries; 3) Disseminate outcomes and facilitate interactions between national and pan-European stakeholders to develop analysis tools that present relevant outcomes to all stakeholders, create feedback loops for AYA cancer patients, healthcare systems, and policy-makers.