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，旨在改善青少年和青年癌症患者(AYA)的医疗服务、研究和结果，AYA是指在癌症诊断时年龄在15-39岁之间的个人。患有癌症的阿亚人是一个独特的群体；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。与针对儿科癌症患者的专门医疗保健和试验不同，Aya特定的医疗服务很稀缺，在欧洲各地各不相同。处于社会和经济核心的阿亚人需要获得年龄调整的高质量医疗保健。AYA护理和研究将受益于以患者为中心的数据的收集和汇集以及所有利益相关者之间的合作：患者、医疗保健专业人员、科学家和政策制定者。我们由Aya-CARE、数据科学和登记、欧洲癌症组织、欧洲青年癌症组织和EORTC的临床和科学领导者组成的联盟将在之前的倡议和欧盟赠款的基础上再接再厉。在Strong-Aya内部，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，与包括患者在内的所有利益相关者共同创造，为Aya医疗带来新的见解。项目目标包括：1)为癌症AYA制定核心成果集(COS)；2)在5个国家医疗系统(FR、IT、NL、UK、PL)实施COS，并建立国家结果数据管理和临床决策基础设施以及也欢迎未来欧洲国家的泛欧洲生态系统；3)传播成果并促进国家和泛欧洲利益攸关方之间的互动，以开发数据驱动的分析工具来处理和呈现相关结果，为Aya癌症患者和医疗保健系统建立反馈循环，并改进向政策制定者报告和评估产出。

STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for Adolescents and Young Adults (AYA) with cancer, defined as individuals 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. AYAs who are at the core of society and 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 of clinical and scientific leaders in AYA-care, data science and registries, European Cancer Organisation, Youth Cancer Europe and EORTC will build on previous 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 toolsthat bring, in co-creation with allstakeholdersincluding patients, novel insightsinto 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) and establish national infrastructures for outcome data management and clinical decision-making and a pan-European ecosystem that also welcomes future European countries; 3) Disseminate outcomes and facilitate 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.