CCSS Expansion Study Supplement

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。随着成功的招聘和纵向跟进， 包括三十年(1970-1999)诊断和治疗的幸存者，CCSS是世界上 最大的已建立的生存研究开放资源，有38,036名合格的幸存者可供 晚期死亡率调查，以及25,665名对健康相关和生活质量有贡献的参与者 结果。该资源包括治疗暴露的全面注释、持续的纵向 随访和建立的生物库，其中8,380人的基因分型(SNP阵列)和DNA测序 幸存者可以被调查人员用来确定疾病的遗传易感性-以及治疗- 相关的后遗症。放射治疗(RT)在过去的二十年里有了很大的发展，因为 建立CCSS队列。与以前的CCSS方法不同，CCSS方法需要RT的纸质副本 供MD Anderson的CCSS辐射剂量测定中心审查的规划文件，来自现代的数据 RT规划、收集和处理跨越20年的多机构RT DICOM数据将需要 新的和强大的基础设施。在这项初步研究中，我们建议收集和处理100个放射治疗记录 来自五个有代表性的CCSS机构，目的是开发和测试标准化数据 收集和处理方法，用于未来的CCSS扩展。

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 successful recruitment and longitudinal follow-up of the cohort that includes survivors diagnosed and treated over three decades (1970-1999), the CCSS is the world’s largest established open resource for survivorship research with 38,036 eligible survivors available for investigation of late mortality, and 25,665 participants who have contributed health-related and quality of life outcomes. The resource includes comprehensive annotation of treatment exposures, ongoing longitudinal follow-up and an established biorepository from which genotype (SNP array) and DNA sequencing of 8,380 survivors are available to investigators for identification of genetic susceptibility for disease- and treatment- related late effects. Radiation therapy (RT) has substantially evolved over the past two decades since the establishment of the CCSS cohort. As opposed to previous CCSS methods which required paper copies of RT planning documents for review by the CCSS Radiation Dosimetry Center at MD Anderson, data from modern RT planning, collection and processing multi-institutional RT DICOM data spanning two decades will require a new and robust infrastructure. In this pilot study, we propose to collect and process 100 radiotherapy records from each of five representative CCSS institutions with the aim of a developing and testing a standardized data collection and processing methodology for use in a future CCSS expansion.