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

STRONG-AYA是一个新的、跨学科的、多方利益相关者的欧洲网络，旨在改善15-39岁癌症诊断个体的医疗保健服务、研究和结果（青少年和年轻人；“AYA”）。AYA与癌症形成独特的群体；他们面临着特定年龄的问题（如不孕、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。与专门针对儿科癌症患者的医疗保健和研究不同，针对美国儿科协会的医疗保健服务很少，而且在欧洲各地各不相同。他们是欧洲社会和经济的核心，需要获得基于证据的年龄调整的高质量医疗保健。AYA的护理和研究将受益于收集和利用以患者为中心的数据，与临床和卫生服务数据相结合，以及所有利益相关者（患者、卫生保健专业人员、研究人员和卫生保健政策制定者）之间的广泛合作。我们的联盟（临床和科学领导者在人工智能护理，数据科学家和癌症登记处，欧洲癌症组织和青年癌症欧洲患者和政策倡导者，专家研究伦理和监管国际研究组织，如EORTC）将建立与以前和其他正在进行的倡议和欧盟资助。在STRONG-AYA内部，我们将建立一个基于价值的医疗保健研究生态系统，开发数据驱动的交互式政策和可视化工具，与所有利益相关者（包括患者）共同创造，为AYA医疗保健带来新颖的见解。该项目的目标包括：1)为患有癌症的aya制定核心结果集（COS）；2)在5个国家医疗保健系统（FR、IT、NL、UK、PL）中实施COS，这些系统具有临床决策、研究和卫生政策中结果数据利用的国家基础设施。然后，泛欧生态系统将利用这些国际数据，欢迎未来的欧洲国家；3)传播结果并促进国家和泛欧洲利益相关者之间的互动，以开发分析工具，向所有利益相关者展示相关结果，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.