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Why do publications about LTFU Study results refer to the Childhood Cancer Survivor Study (CCSS)?

Long-Term Follow-Up Study (LTFU) is the name we use when communicating about the study with participants, while Childhood Cancer Survivor Study (CCSS) is the scientific name used by researchers and the medical community. “Long-Term Follow-Up Study” emphasizes what the study is about without disclosing that some participants may be survivors of childhood cancer, thus protecting their personal health information.

You may hear about the Childhood Cancer Survivor Study or CCSS when important new findings are reported in the news. We want you to take pride in the attention the study receives, because your dedication contributes to every advance we make in protecting the health of survivors.

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  • Health status of adult long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2003

    Citation: 290(12):1583-92

    Author(s): Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LL, Oeffinger KC.

    Journal: JAMA

  • Pregnancy outcome of partners of male survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2003

    Citation: 21(4):716-21

    Author(s): Green DM, Whitton JA, Stovall M, Mertens AC, Donaldson SS, Ruymann FB, Pendergrass TW, Robison LL.

    Journal: J Clin Oncol

  • A methodological issue in the analysis of second-primary cancer incidence in long-term survivors of childhood cancers.

    2003

    Citation: 158(11):1108-13

    Author(s): Yasui Y, Liu Y, Neglia JP, Friedman DL, Bhatia S, Meadows AT, Diller LR, Mertens AC, Whitton J, Robison LL.

    Journal: Am J Epidemiol

  • Obesity in adult survivors of childhood acute lymphoblastic leukemia: A Report from the Childhood Cancer Survivor Study.

    2003

    Citation: 21(7):1359-65

    Author(s): Oeffinger KC, Mertens AC, Sklar CA, Yasui Y, Fears T, Stovall M, Vik TA, Inskip PD, Robison LL.

    Journal: J Clin Oncol

  • Endocrine and cardiovascular late effects among adult survivors of childhood brain tumors: Childhood Cancer Survivor Study.

    2003

    Citation: 97(3):663-73

    Author(s): Gurney JG, Kadan-Lottick NS, Packer RJ, Neglia JP, Sklar CA, Punyko JA, Stovall M, Yasui Y, Nicholson HS, Wolden S, McNeil DE, Mertens AC, Robison LL.

    Journal: Cancer

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