Husson Olga, Ligtenberg Marjolijn J L, van de Poll-Franse Lonneke V, Prins Judith B, van den Bent Martin J, van Eenbergen Mies C, Fles Renske, Manten-Horst Eveliene, Gietema Jourik A, van der Graaf Winette T A
Department of Medical Oncology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.
Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.
Cancers (Basel). 2021 May 13;13(10):2348. doi: 10.3390/cancers13102348.
Adolescent and young adult (AYA) cancer patients suffer from delay in diagnosis, and lack of centralized cancer care, age-adjusted expertise, and follow-up care. This group presents with a unique spectrum of cancers, distinct tumor biology, cancer risk factors, developmental challenges, and treatment regimens that differ from children and older adults. It is imperative for advances in the field of AYA oncology to pool data sources across institutions and create large cohorts to address the many pressing questions that remain unanswered in this vulnerable population. We will create a nationwide infrastructure (COMPRAYA) for research into the incidence, predictive/prognostic markers, and underlying mechanisms of medical and psychosocial outcomes for AYA between 18-39 years diagnosed with cancer. A prospective, observational cohort of ( = 4000), will be established. Patients will be asked to (1) complete patient-reported outcome measures; (2) donate a blood, hair, and stool samples (to obtain biochemical, hormonal, and inflammation parameters, and germline DNA); (3) give consent for use of routinely archived tumor tissue and clinical data extraction from medical records and registries; (4) have a clinic visit to assess vital parameters. Systematic and comprehensive collection of patient and tumor characteristics of AYA will support the development of evidence-based AYA care programs and guidelines.
青少年及年轻成人（AYA）癌症患者面临诊断延迟、缺乏集中的癌症护理、年龄适配的专业知识以及后续护理等问题。这一群体患有的癌症种类独特，肿瘤生物学特性、癌症风险因素、发育挑战以及治疗方案均与儿童和老年成人不同。AYA肿瘤学领域的进展必须整合各机构的数据来源并创建大型队列，以解决这个脆弱群体中许多仍未得到解答的紧迫问题。我们将创建一个全国性的基础设施（COMPRAYA），用于研究18至39岁被诊断患有癌症的AYA的发病率、预测/预后标志物以及医学和心理社会结局的潜在机制。将建立一个前瞻性观察队列（n = 4000）。患者将被要求：（1）完成患者报告的结局测量；（2）捐献血液、头发和粪便样本（以获取生化、激素和炎症参数以及种系DNA）；（3）同意使用常规存档的肿瘤组织以及从医疗记录和登记处提取临床数据；（4）进行门诊就诊以评估生命体征参数。系统全面地收集AYA患者和肿瘤的特征将有助于制定基于证据的AYA护理计划和指南。
