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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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  • Pain in Long-Term Adult Survivors of Childhood Cancers and Their Siblings: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 152(11):2616-24

    Author(s): Lu Q, Krull KR, Leisenring W, Owen JE, Kawashima T, Tsao JC, Zebrack B, Mertens A, Armstrong GT, Stovall M, Robison LL, Zeltzer LK.

    Journal: Pain

  • Morbidity and mortality in long-term survivors of Hodgkin lymphoma: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(6):1806-16

    Author(s): Castellino SM, Geiger AM, Mertens AC, Leisenring WM, Tooze JA, Goodman P, Stovall M, Robison LL, Hudson MM.

    Journal: Blood

  • Decreased Fertility Among Female Childhood Cancer Survivors Who received 22 to 27 Gy Hypothalamic/Pituitary Irradiation: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 95(6):1922-7

    Author(s): Green DM, Nolan VG, Kawashima T, Stovall M, Donaldson SS, Srivastava D, Leisenring W, Robison LL, Sklar CA.

    Journal: Fertil Steril

  • Semiparametric transformation models for joint analysis of multivariate recurrent and terminal events.

    2011

    Citation: 30(25): 3010-23

    Author(s): Zhu L, Sun J, Srivastava DK, Tong X, Leisenring W, Zhang H, Robison LL.

    Journal: Stat Med

  • Impact of insurance type on survivor-focused and general preventive health care utilization in adult survivors of childhood cancer: The Childhood Cancer Survivor Study (CCSS).

    2011

    Citation: 117(9): 1966-75

    Author(s): Casillas J, Castellino SM, Hudson MM, Mertens AC, Lima IS, Liu Q, Zeltzer LK, Yasui Y, Robison LL, Oeffinger KC.

    Journal: Cancer

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