CCSS Expansion Study Supplement

摘要

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.