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)
Project #
Application #
Study Section
Special Emphasis Panel (ZCA1-SRLB-4 (O2))
Program Officer
Wu, Roy S
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
St. Jude Children's Research Hospital
United States
Zip Code
Ness, Kirsten K; Hudson, Melissa M; Jones, Kendra E et al. (2016) Effect of Temporal Changes in Therapeutic Exposure on Self-reported Health Status in Childhood Cancer Survivors. Ann Intern Med :
Mostoufi-Moab, Sogol; Seidel, Kristy; Leisenring, Wendy M et al. (2016) Endocrine Abnormalities in Aging Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study. J Clin Oncol 34:3240-7
Friedman, Danielle Novetsky; Chou, Joanne F; Oeffinger, Kevin C et al. (2016) Chronic medical conditions in adult survivors of retinoblastoma: Results of the Retinoblastoma Survivor Study. Cancer 122:773-81
Cox, Cheryl L; Zhu, Liang; Ojha, Rohit P et al. (2016) The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies. J Cancer Surviv 10:743-58
Liu, Qi; Leisenring, Wendy M; Ness, Kirsten K et al. (2016) Racial/Ethnic Differences in Adverse Outcomes Among Childhood Cancer Survivors: The Childhood Cancer Survivor Study. J Clin Oncol 34:1634-43
Veiga, Lene H S; Holmberg, Erik; Anderson, Harald et al. (2016) Thyroid Cancer after Childhood Exposure to External Radiation: An Updated Pooled Analysis of 12 Studies. Radiat Res 185:473-84
Rach, Amanda M; Crabtree, Valerie McLaughlin; Brinkman, Tara M et al. (2016) Predictors of fatigue and poor sleep in adult survivors of childhood Hodgkin's lymphoma: a report from the Childhood Cancer Survivor Study. J Cancer Surviv :
Zhou, Rachel; Ng, Angela; Constine, Louis S et al. (2016) A Comparative Evaluation of Normal Tissue Doses for Patients Receiving Radiation Therapy for Hodgkin Lymphoma on the Childhood Cancer Survivor Study and Recent Children's Oncology Group Trials. Int J Radiat Oncol Biol Phys 95:707-11
Dietz, Andrew C; Chen, Yan; Yasui, Yutaka et al. (2016) Risk and impact of pulmonary complications in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer 122:3687-3696
Yeh, Jennifer M; Hanmer, Janel; Ward, Zachary J et al. (2016) Chronic Conditions and Utility-Based Health-Related Quality of Life in Adult Childhood Cancer Survivors. J Natl Cancer Inst 108:

Showing the most recent 10 out of 262 publications