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

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

Wendy M Leisenring  1 , Ann C Mertens, Gregory T Armstrong, Marilyn A Stovall, Joseph P Neglia, Jennifer Q Lanctot, John D Boice Jr, John A Whitton, Yutaka Yasui
Affiliations
Review

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

Wendy M Leisenring et al. J Clin Oncol. .

Abstract

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.

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Conflict of interest statement

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

Figures

Fig 1.
Fig 1.
Participation and contact in the Childhood Cancer Survivor Study.
Fig 2.
Fig 2.
Strategy for validation of self-reported outcomes. HIPAA, Health Insurance Portability and Accountability Act Privacy Rule.
Fig 3.
Fig 3.
Validation experience for congestive heart failure (CHF) via telephone script and medical record review.
Fig 4.
Fig 4.
Expected numbers of breast cancers (BCs) in three age cohorts after 20 years of follow-up.
See this image and copyright information in PMC

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References

    1. Robison LL, Mertens AC, Boice JD, et al. Study design and cohort characteristics of the Childhood Cancer Survivor Study: A multi-institutional collaborative project. Med Pediatr Oncol. 2002;38:229–239. - PubMed
    1. Mertens AC, Walls RS, Taylor L, et al. Characteristics of childhood cancer survivors predicted their successful tracing. J Clin Epidemiol. 2004;57:933–944. - PubMed
    1. Yasui Y, Liu Y, Neglia JP, et al. A methodological issue in the analysis of second primary cancer incidence in long-term survivors of childhood cancers. Am J Epidemiol. 2003;158:1108–1113. - PubMed
    1. Travis LB, Holowaty EJ, Bergfeldt K, et al. Risk of leukemia after platinum-based chemotherapy for ovarian cancer. N Engl J Med. 1999;340:351–357. - PubMed
    1. Tucker MA, D'Angio GJ, Boice JD, Jr, et al. Bone sarcomas linked to radiotherapy and chemotherapy in children. N Engl J Med. 1987;317:588–593. - PubMed

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