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.
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.
|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|
|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|
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