ExtractEHR Pilot Childhood Cancer Data Initiative (CCDI)

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。当前补充应用程序的目标是试用一种提取工具来捕获 为儿童癌症幸存者提供癌症治疗信息。结果将为未来的扩展提供信息 儿童癌症幸存者研究。本附录中的所有数据将提交给儿童癌症数据 倡议(CCDI)生态系统。

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. The objective of the current supplement application is to pilot an extraction tool to capture cancer treatment information for survivors of childhood cancer. Results will inform a future expansion of the Childhood Cancer Survivor Study. All data from this supplement will be submitted to the Childhood Cancer Data Initiative (CCDI) Ecosystem.