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.

Public Health Relevance

Survival rates for many of the childhood and adolescent cancers have improved at a remarkable pace over the past five decades. The CCSS cohort has been the source of some of the most significant publications to date addressing the long-term mortality, morbidity and quality of life of survivors of childhood cancer. Understanding the risk for late effects of therapy provides the basis for health screening recommendations and interventions.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Resource-Related Research Projects--Cooperative Agreements (U24)
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Study Section
Special Emphasis Panel (ZCA1)
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Timmer, William C
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St. Jude Children's Research Hospital
United States
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Wells, Elizabeth M; Ullrich, Nicole J; Seidel, Kristy et al. (2018) Longitudinal assessment of late-onset neurologic conditions in survivors of childhood central nervous system tumors: a Childhood Cancer Survivor Study report. Neuro Oncol 20:132-142
Dagnall, Casey L; Morton, Lindsay M; Hicks, Belynda D et al. (2018) Successful use of whole genome amplified DNA from multiple source types for high-density Illumina SNP microarrays. BMC Genomics 19:182
Yuan, Yan; Zhou, Qian M; Li, Bingying et al. (2018) A threshold-free summary index of prediction accuracy for censored time to event data. Stat Med 37:1671-1681
Chow, Eric J; Chen, Yan; Hudson, Melissa M et al. (2018) Prediction of Ischemic Heart Disease and Stroke in Survivors of Childhood Cancer. J Clin Oncol 36:44-52
Cheung, Yin Ting; Brinkman, Tara M; Li, Chenghong et al. (2018) Chronic Health Conditions and Neurocognitive Function in Aging Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study. J Natl Cancer Inst 110:411-419
Gibson, Todd M; Mostoufi-Moab, Sogol; Stratton, Kayla L et al. (2018) Temporal patterns in the risk of chronic health conditions in survivors of childhood cancer diagnosed 1970-99: a report from the Childhood Cancer Survivor Study cohort. Lancet Oncol 19:1590-1601
Krull, Kevin R; Hardy, Kristina K; Kahalley, Lisa S et al. (2018) Neurocognitive Outcomes and Interventions in Long-Term Survivors of Childhood Cancer. J Clin Oncol 36:2181-2189
Weinstein, Aurélie G; Henrich, Christopher C; Armstrong, Gregory T et al. (2018) Roles of positive psychological outcomes in future health perception and mental health problems: A report from the Childhood Cancer Survivor Study. Psychooncology 27:2754-2760
Machiela, Mitchell J; Grünewald, Thomas G P; Surdez, Didier et al. (2018) Genome-wide association study identifies multiple new loci associated with Ewing sarcoma susceptibility. Nat Commun 9:3184
Gilleland Marchak, Jordan; Seidel, Kristy D; Mertens, Ann C et al. (2018) Perceptions of risk of infertility among male survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer 124:2447-2455

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