The Childhood Cancer Survivor Study (CCSS), a multi-institutional, multi-disciplinary collaborative research resource, was established to systematically evaluate long-term outcomes among childhood cancer patients who survived five or more years from diagnosis. The CCSS, which includes banked biospecimens, detailed information on cancer diagnosis, treatment-related exposures, and outcomes, is the largest comprehensive resource available to facilitate the long-term study of pediatric cancer survivors. Recruitment of the initial cohort, consisting of survivors of specific cancers diagnosed prior to 21 years of age between 1970 and 1986 and a cohort of siblings of survivors, began in 1994, In 2008, expansion of the cohort with five-year survivors diagnosed between 1987 and 1999 was initiated. When expansion is complete, the combined cohort will include more than 37,750 eligible survivors with detailed treatment exposure information available for investigation of late mortality. Among the eligible cohort, an estimated 26,000 to 27,000 active survivor participants will contribute detailed health-related and quality of life outcomes. Extensive use of the CCSS resource by the research community has resulted in: 160 published and in press manuscripts;143 abstracts/presentations;29 investigator-initiated grants (totaling approximately $24.7 million);formal training of 31 students/new investigators;17 molecular genetics investigations;the conduct of 4 randomized intervention trials;increased knowledge to inform exposure-based clinical follow-up guidelines;and, a highly successful model for multiple international initiativs of pediatric cancer survivorship research. During the next five years, activities will focus on maintaining, enhancing, and maximizing 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 ofthe childhood and adolescent cancers have improved at a remarkable pace over the past four decades. The CCSS cohort has been the source of some of the most significant publications to date addressing long-term mortality, morbidity, and quality of life of childhood cancer survivors. Understanding the risk for late effects Of therapy provides the basis for health screening recommendations.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Resource-Related Research Projects--Cooperative Agreements (U24)
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Special Emphasis Panel (ZCA1-SRLB-4 (O2))
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Wu, Roy S
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St. Jude Children's Research Hospital
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Lubin, Jay H; Adams, M Jacob; Shore, Roy et al. (2017) Thyroid Cancer Following Childhood Low-Dose Radiation Exposure: A Pooled Analysis of Nine Cohorts. J Clin Endocrinol Metab 102:2575-2583
Sherborne, Amy L; Lavergne, Vincent; Yu, Katharine et al. (2017) Somatic and Germline TP53 Alterations in Second Malignant Neoplasms from Pediatric Cancer Survivors. Clin Cancer Res 23:1852-1861
Ness, Kirsten K; Hudson, Melissa M; Jones, Kendra E et al. (2017) Effect of Temporal Changes in Therapeutic Exposure on Self-reported Health Status in Childhood Cancer Survivors. Ann Intern Med 166:89-98
Marina, Neyssa M; Liu, Qi; Donaldson, Sarah S et al. (2017) Longitudinal follow-up of adult survivors of Ewing sarcoma: A report from the Childhood Cancer Survivor Study. Cancer 123:2551-2560
Devine, Katie A; Mertens, Ann C; Whitton, John A et al. (2017) Factors associated with physical activity among adolescent and young adult survivors of early childhood cancer: A report from the childhood cancer survivor study (CCSS). Psychooncology :
Arnold, Michael A; Barr, Fredric G (2017) Molecular diagnostics in the management of rhabdomyosarcoma. Expert Rev Mol Diagn 17:189-194
Vuotto, Stefanie C; Krull, Kevin R; Li, Chenghong et al. (2017) Impact of chronic disease on emotional distress in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer 123:521-528
Huang, I-Chan; Brinkman, Tara M; Armstrong, Gregory T et al. (2017) Emotional distress impacts quality of life evaluation: a report from the Childhood Cancer Survivor Study. J Cancer Surviv 11:309-319
King, Allison A; Seidel, Kristy; Di, Chongzhi et al. (2017) Long-term neurologic health and psychosocial function of adult survivors of childhood medulloblastoma/PNET: a report from the Childhood Cancer Survivor Study. Neuro Oncol 19:689-698
Turcotte, Lucie M; Liu, Qi; Yasui, Yutaka et al. (2017) Temporal Trends in Treatment and Subsequent Neoplasm Risk Among 5-Year Survivors of Childhood Cancer, 1970-2015. JAMA 317:814-824

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