Childhood Cancer Survivor Study

摘要 儿童癌症生存研究(CCSS)是一项多机构、多学科的合作研究 为系统评估被诊断为癌症的儿童的长期结果而建立的资源 在确诊后存活了五年或更长时间。随着最近成功地将队列扩大到包括 经过三十年(1970-1999)的诊断和治疗，CCSS是世界上最大的 开放的生存研究资源，有35,923名符合条件的幸存者可用于调查晚期死亡率， 以及24,368名参与者，他们对健康和生活质量做出了贡献。该资源包括 全面说明治疗暴露、持续的纵向跟踪和已建立的 生物库，从中对近6,000名幸存者进行基因分型(SNP阵列)和测序(整个外显子组) 可供研究人员用于确定疾病和治疗导致的晚期遗传易感性 效果。研究界的广泛使用已导致：现已出版或出版的稿件有264篇 被引用超过12,600次；229篇提交摘要；42项由研究人员发起的拨款，总计3710万美元 资金；由673名调查人员组成的不同小组使用；培训63名年轻调查人员；开展6项工作 随机试验；增加知识，为基于暴露的临床护理指南提供信息；以及高度 多个国家和国际儿童癌症生存合作倡议的成功典范 研究。在接下来的五年里，活动的重点将是维护、加强和促进这一技术的使用 单一资源。CCSS资源的总体目标是增加创新和高效率的行为 与儿童癌症存活期相关的影响研究。

ABSTRACT The Childhood Cancer Survivor Study (CCSS) is a multi-institutional, multi-disciplinary collaborative research resource established to systematically evaluate long-term outcomes among children diagnosed with cancer who survived five or more years from diagnosis. With the recent successful expansion of the cohort to include survivors diagnosed and treated over three decades (1970-1999), the CCSS is the world's largest established open resource for survivorship research with 35,923 eligible survivors available for investigation of late mortality, and 24,368 participants who have contributed health-related and quality of life outcomes. The resource includes comprehensive annotation of treatment exposure, ongoing longitudinal follow-up and an established biorepository, from which genotyping (SNP array) and sequencing (whole exome) of almost 6,000 survivors will be available for investigators for identification of genetic susceptibility for disease- and treatment-induced late effects. Extensive use by the research community has resulted in: 264 published or in press manuscripts now cited over 12,600 times; 229 presented abstracts; 42 investigator-initiated grants, totaling $37.1 million in funding; utilization by a diverse group of 673 investigators; training of 63 young investigators; conduct of six randomized trials; increased knowledge to inform exposure-based clinical care guidelines; and a highly successful model for multiple national and international collaborative initiatives of pediatric cancer survivorship research. During the next five years, activities will focus on maintaining, enhancing and promoting use of this singular resource. The overarching goal of the CCSS resource is to increase the conduct of innovative and high impact research related to pediatric cancer survivorship.