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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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  • Absolute risk prediction of second primary thyroid cancer among 5-year survivors of childhood cancer.

    2013

    Citation: 13(1): 119-27

    Author(s): Kovalchik SA, Ronckers CM, Veiga LH, Sigurdson AJ, Inskip PD, de Vathaire F, Sklar CA, Donaldson SS, Anderson H, Bhatti P, Hammond S, Leisenring WM, Mertens AC, Smith SA, Stovall M, Tucker MA, Weathers RE, Robison LL, Pfeiffer RM.

    Journal: J Clin Oncol

  • Changes in health status among aging survivors of pediatric upper and lower extremity sarcoma: A Report from the Childhood Cancer Survivor Study.

    2013

    Citation: 94(6): 1062-73

    Author(s): Marina N, Hudson MM, Jones KE, Mulrooney DA, Avedian R, Donaldson SS, Popat R, West DW, Fisher P, Leisenring W, Stovall M, Robison LL, Ness KK.

    Journal: Arch Phys Med Rehabil

  • A General Semiparametric Hazards Regression Model: Efficient Estimation and Structure Selection.

    2013

    Citation: 32(28):4980-94

    Author(s): Tong X, Zhu L, Leng C, Leisenring W, Robison LL.

    Journal: Stat Med

  • Infertility, Infertility Treatment, and Achievement of Pregnancy in Female Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study Cohort.

    2013

    Citation: 14(9): 873-81

    Author(s): Barton SE, Najita JS, Ginsburg ES, Leisenring WM, Stovall M, Weathers RE, Sklar CA, Robison LL, Diller L.

    Journal: Lancet Oncol

  • Prevalence and predictors of prescription psychoactive medication use in adult survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2013

    Citation: 7(1): 104-14

    Author(s): Brinkman TM, Ullrich NJ, Zhang N, Green DM, Zeltzer LK, Lommel KM, Brouwers P, Srivastava DK, Jain N, Robison LL, Krull KR.

    Journal: J Cancer Surviv

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