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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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  • Comprehensive molecular characterization of pediatric radiation-induced high-grade glioma.

    2021

    Citation: 12(1):5531

    Author(s): DeSisto J, Lucas JT, Xu K, Donson A, Lin T, Sanford B, Wu G, Tran QT, Hedges D, Hsu C, Armstrong GT, Arnold M, Bhatia S, Flannery P, Lemma R, Hardie L, Schüller U, Venkataraman S, Hoffman LM, Dorris K, Levy JM, Hankinson TC, Handler M, Liu A, Foreman N, Vibhakar R, Jones K, Allen S, Zhang J, Baker SJ, Merchant TE, Orr BA, Green AL.

    Journal: Nat Commun

  • Statistical analysis of clustered mixed recurrent-event data with application to a cancer survivor study.

    2020

    Citation: 26(4):820-832

    Author(s): Zhu L, Choi S, Li Y, Huang X, Sun J, Robison LL.

    Journal: Lifetime Data Anal

  • Incidence of and risk factors for late cholecystectomy in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.  

    2020

    Citation: 133:4-13

    Author(s): Dieffenbach BV, Li N, Madenci AL, Murphy AJ, Barnea D, Gibson TM, Tonorezos ES, Leisenring WM, Howell RM, Diller LR, Liu Q, Chow EJ, Armstrong GT, Yasui Y, Oeffinger KC, Weldon CB, Weil BR.

    Journal: Eur J Cancer

  • Late mortality and chronic health conditions in long-term survivors of early-adolescent and young adult cancers: a retrospective cohort analysis from the Childhood Cancer Survivor Study.

    2020

    Citation: 21(3):421-435

    Author(s): Suh E, Stratton KL, Leisenring WM, Nathan PC, Ford JS, Freyer DR, McNeer J, Stock W, Stovall M, Krull KR, Sklar CA, Neglia JP, Armstrong GT, Oeffinger KC, Robison LL, Henderson TO.

    Journal: Lancet Oncol

  • Association of breast cancer risk after childhood cancer with radiation dose to the breast and anthracycline use: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 173(12):1171-1179

    Author(s): Veiga LH, Curtis RE, Morton LM, Withrow DR, Howell R, Smith SA, Weathers RE, Oeffinger KC, Moskowitz CS, Henderson TO, Arnold MA, Gibson TM, Leisenring WM, Neglia JP, Turcotte LM, Whitton JA, Robison LL, Armstrong GT, Inskip PD, Berrington de Gonzalez A.

    Journal: JAMA Pediatr

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