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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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  • Late cardiac toxic effects associated with treatment protocols for Hodgkin lymphoma in children

    2024

    Citation: 7(1):e2351062

    Author(s): Lo AC, Liu A, Liu Q, Yasui Y, Castellino SM, Kelly KM, Hererra AF, Friedberg JW, Friedman DL, Schwartz CL, Pei Q, Kessel S, Bergeron-Gravel S, Dama H, Roberts K, Constine LS, Hodgson DC

    Journal: JAMA Netw Open

  • Impact of risk-based therapy on late morbidity and mortality in neuroblastoma survivors: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 116(6):885-894

    Author(s): Friedman DN, Goodman PJ, Leisenring WM, Diller LR, Cohn SL, Howell RM, Smith SA, Tonorezos ES, Wolden SL, Neglia JP, Ness KK, Gibson TM, Nathan PC, Turcotte LM, Weil BR, Robison LL, Oeffinger KC, Armstrong GT, Sklar CA, Henderson TO

    Journal: J Natl Cancer Inst

  • Evolving therapies, neurocognitive outcomes and functional independence in adult survivors of childhood glioma

    2024

    Citation: 116(2):288-298

    Author(s): Papini C, Mirzaei S, Xing M, Olsson I, de Blank P, Lange KR, Salloum R, Srivastava D, Leisenring WM, Howell RM, Oeffinger KC, Robison LL, Armstrong GT, Krull KR, Brinkman TM

    Journal: J Natl Cancer Inst

  • Late subsequent leukemia after childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS)

    2024

    Citation: 13(20):e70086

    Author(s): Ghosh T, Hyun G, Dhaduk R, Conces M, Arnold MA, Howell RM, Henerson TO, McDonald A, Robison LL, Yasui Y, Ness KK, Armstrong GT, Neglia JP, Turcotte LM

    Journal: Cancer Med

  • Polygenic risk scores, radiation treatment exposures and subsequent cancer risk in childhood cancer survivors

    2024

    Citation: 30(3):690-698

    Author(s): Gibson TM, Karyadi DM, Hartley SW, Arnold MA, Berrington de Gonzalez A, Conces MR, Howell RM, Kapoor V, Leisenring WM, Neglia JP, Sampson JN, Turcotte LM, Chanock SJ, Armstrong GT, Morton LM

    Journal: Nat Med

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