CCSS Expansion Study Supplement

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。随着成功招募和纵向跟踪的 包括三十年（1970-1999）诊断和治疗的幸存者的队列，CCSS是世界上 最大的幸存者研究开放资源，有38，036名合格的幸存者可供使用， 对晚期死亡率的调查，以及25，665名参与者对健康相关和生活质量的贡献 结果。该资源包括对治疗暴露的全面注释， 随访和建立的生物储存库，从基因型（SNP阵列）和DNA测序的8，380 幸存者可供研究人员鉴定疾病的遗传易感性-和治疗- 相关的后期影响。放射治疗（RT）在过去的二十年中已经有了很大的发展， 建立哥斯达黎加社会保障机构队列。与以前需要RT纸质副本的CCSS方法不同， 计划文件，供MD安德森的CCSS辐射剂量测定中心审查，数据来自现代 RT规划、收集和处理跨越二十年的多机构RT DICOM数据将需要一个 新的和强大的基础设施。在这项试点研究中，我们建议收集和处理100个放射治疗记录 来自五个代表性的CCSS机构，目的是开发和测试标准化数据， 收集和处理方法，供今后扩大哥斯达黎加社会保障系统时使用。

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.