Survival rates for many of the childhood and adolescent cancers have improved at a remarkable pace over the past 35 years. With this success has come the need and responsibility to consider the long-term morbidity and mortality associated with the treatments responsible for the increases in survival, the resource represented by the Childhood Cancer Survivor Study (CCSS) is the result of a multi-institutional collaboration and represents the single most comprehensive body of information ever assembled on the health status of long-term survivors. CCSS has successfully established and followed 14,370 five-year survivors of childhood and adolescent cancer diagnosed between 1970-1986 and a sample of 3,737 sibling controls. CCSS participants, derived through 26 participating clinical centers, have been characterized relative to cancer diagnosis, therapy received and health and quality of life-related outcomes encompassing over 248,000 person-years of follow-up. CCSS has established an effective organizational structure to direct the scientific and administrative functions of this unique resource. The CCSS resource has been utilized by investigators from a broad range of disciplines, including inquiries from 82 investigators new to CCSS, with 56 subsequently becoming involved in research initiatives. As a resource, CCSS produced 41 peer-reviewed publications during current funding period and has been the source of 14 investigator-initiated projects with independent funding in excess of $9,000,000 from NIH (n=6) and non-governmental agencies/foundations (n=8). The objectives of this competitive renewal are to: (1.) maintain the strong and productive resource of the CCSS through continued follow-up of the initial population, diagnosed between 1970-86;(2.) enhance the CCSS resource by recruiting 14,800 5-year survivors diagnosed between 1987-99 and 4000 sibling controls;and, (3.) promote and facilitate the use of the CCSS resource including the study participants, as well as data and biological samples previously collected for investigator-initiated studies that address important questions relating to childhood cancer survivors. Within the framework of defined guidelines and procedures, aggressive new initiatives will be undertaken to increase access/utilization of CCSS as a resource by (a) markedly increasing visibility through publications, presentations at national/international meetings, links with websites, direct marketing, and establishment of liaisons with professional societies;and (b) implementing an innovative strategy of establishing a comprehensive public-use data set. CCSS provides a dynamic framework and resource to investigate current and future questions among childhood cancer survivors.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Resource-Related Research Projects--Cooperative Agreements (U24)
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Study Section
Subcommittee G - Education (NCI)
Program Officer
Wu, Roy S
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St. Jude Children's Research Hospital
United States
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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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