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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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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Kirchhoff, Anne C; Nipp, Ryan; Warner, Echo L et al. (2018) ""Job Lock"" Among Long-term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study. JAMA Oncol 4:707-711
Zheng, Daniel J; Krull, Kevin R; Chen, Yan et al. (2018) Long-term psychological and educational outcomes for survivors of neuroblastoma: A report from the Childhood Cancer Survivor Study. Cancer 124:3220-3230
Scott, Jessica M; Li, Nan; Liu, Qi et al. (2018) Association of Exercise With Mortality in Adult Survivors of Childhood Cancer. JAMA Oncol 4:1352-1358
Brooke, Russell J; Im, Cindy; Wilson, Carmen L et al. (2018) A High-risk Haplotype for Premature Menopause in Childhood Cancer Survivors Exposed to Gonadotoxic Therapy. J Natl Cancer Inst 110:895-904
Schulte, Fiona; Brinkman, Tara M; Li, Chenghong et al. (2018) Social adjustment in adolescent survivors of pediatric central nervous system tumors: A report from the Childhood Cancer Survivor Study. Cancer 124:3596-3608
Chow, Eric J; Antal, Zoltan; Constine, Louis S et al. (2018) New Agents, Emerging Late Effects, and the Development of Precision Survivorship. J Clin Oncol 36:2231-2240
Mueller, Emily L; Park, Elyse R; Kirchhoff, Anne C et al. (2018) Insurance, chronic health conditions, and utilization of primary and specialty outpatient services: a Childhood Cancer Survivor Study report. J Cancer Surviv 12:639-646
Weil, Brent R; Madenci, Arin L; Liu, Qi et al. (2018) Late Infection-Related Mortality in Asplenic Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study. J Clin Oncol 36:1571-1578
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

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