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

J Clin Oncol. 2009 May 10;27(14):2319-27. doi: 10.1200/JCO.2008.21.1813. Epub 2009 Apr 13.


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.

Publication types

  • Research Support, N.I.H., Extramural
  • Review

MeSH terms

  • Adolescent
  • Age Factors
  • Antineoplastic Agents / therapeutic use
  • Cardiovascular Diseases / epidemiology
  • Child
  • Cohort Studies
  • Comorbidity
  • Data Collection / standards
  • Female
  • Follow-Up Studies
  • Humans
  • Incidence
  • Male
  • Multicenter Studies as Topic
  • National Cancer Institute (U.S.)
  • Neoplasms / mortality*
  • Neoplasms / therapy*
  • Patient Participation / statistics & numerical data*
  • Pregnancy
  • Pregnancy Complications, Neoplastic / mortality
  • Pregnancy Complications, Neoplastic / therapy
  • Quality of Life
  • Radiation Dosage
  • Reproducibility of Results
  • Retrospective Studies
  • Risk Assessment
  • Sex Distribution
  • Siblings
  • Survival Rate
  • Survivors / statistics & numerical data*
  • Treatment Outcome
  • United States / epidemiology


  • Antineoplastic Agents