Pediatric cancer survivorship research: experience of the Childhood Cancer Survivor Study.

Publication Type:

Journal Article


Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Volume 27, Issue 14, p.2319-27 (2009)


2009, Adolescent, Age Factors, Antineoplastic Agents, Cardiovascular Diseases, Center-Authored Paper, Child, Clinical Research Division, Cohort Studies, Comorbidity, Data Collection, Female, Follow-Up Studies, Humans, Incidence, Male, Multicenter Studies as Topic, National Cancer Institute (U.S.), Neoplasms, Patient Participation, PREGNANCY, Pregnancy Complications, Neoplastic, Public Health Sciences Division, Quality of Life, Radiation Dosage, Reproducibility of Results, Research Trials Office Core Facility - Biostatistics Service, Retrospective Studies, Risk Assessment, Sex Distribution, Shared Resources, Siblings, Survival Rate, Survivors, Treatment Outcome, United States


The Childhood Cancer Survivor Study (CCSS) is a comprehensive multicenter study designed to quantify and better understand the effects of pediatric cancer and its treatment on later health, including behavioral and sociodemographic outcomes. The CCSS investigators have published more than 100 articles in the scientific literature related to the study. As with any large cohort study, high standards for methodologic approaches are imperative for valid and generalizable results. In this article we describe methodological issues of study design, exposure assessment, outcome validation, and statistical analysis. METHODS for handling missing data, intrafamily correlation, and competing risks analysis are addressed; each with particular relevance to pediatric cancer survivorship research. Our goal in this article is to provide a resource and reference for other researchers working in the area of long-term cancer survivorship.