Childhood Cancer Survivor Study

摘要 儿童癌症幸存者研究（CCSS）是一项多机构、多学科的合作研究 建立了一个资源，以系统地评估被诊断患有癌症的儿童的长期结果， 从诊断开始存活了五年或更长时间。随着最近成功地扩大了队列， 在过去三十年（1970-1999年）中，CCSS是世界上最大的已建立的 生存研究的开放资源，有35，923名合格的幸存者可用于晚期死亡率的调查， 以及24，368名参与者，他们为健康相关和生活质量结果做出了贡献。述资源包括 治疗暴露的全面注释、持续的纵向随访和已建立的 生物储存库，其中基因分型（SNP阵列）和测序（全外显子组）的近6,000名幸存者将 可供研究者用于鉴定疾病和治疗诱导的晚期 方面的影响.被研究界广泛使用，现已发表或出版264份手稿 被引用超过12，600次; 229篇摘要; 42项赞助商发起的赠款，总计3710万美元， 供资;由673名调查员组成的不同群体利用;培训63名年轻调查员;进行6次 随机试验;增加知识，以告知基于安全性的临床护理指南;以及 多个国家和国际儿童癌症生存合作倡议的成功模式 research.在今后五年中，活动的重点将是维持、加强和促进使用这一工具， 单一资源CCSS资源的总体目标是增加创新和高质量的行为， 儿童癌症存活率的影响研究。

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.