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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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  • Clinical and genetic risk factors for radiation-associated ototoxicity: a report from the Childhood Cancer Survivor Study and the St. Jude Lifetime cohort.

    2021

    Citation: 127(21):4091-4102

    Author(s): Trendowski MR, Baedke J, Sapkota Y, Travis LB, Zhang X, Charif OE, Wheeler HE, Leisenring W, Robison LL, Hudson MM, Morton L, Oeffinger KC, Howell RM, Armstrong GT, Bhatia S, Dolan ME.

    Journal: Cancer

  • 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

  • Contribution of polygenic risk to hypertension among long-term survivors of childhood cancer.

    2021

    Citation: 3(1):76-84

    Author(s): Sapkota Y, Li N, Pierzynski J, Mulrooney DA, Ness KK, Morton LM, Michael JR, Zhang J, Bhatia S, Armstrong GT, Hudson MM, Robison LL, Yasui Y.

    Journal: JACC CardioOncol

  • Development and validation of a breast cancer risk prediction model for childhood cancer survivors treated with chest radiation: A report from the Childhood Cancer Survivor Study and the Dutch Hodgkin Late Effects and LATER cohorts.

    2021

    Citation: 39(27):3012-3021

    Author(s): Moskowitz CS, Ronckers CM, Chou JF, Smith SA, Friedman DN, Barnea D, Kok J, de Vries S, Wolden SL, Henderson TO, van der Pal HJH, Kremer LCM, Neglia JP, Turcotte LM, Howell RM, Arnold MA, Schaapveld M, Aleman B, Janus C, Versluys B, Leisenring W, Sklar CA, Begg CB, Pike MC, Armstrong GT, Robison LL, van Leeuwen FE, Oeffinger KC.

    Journal: J Clin Oncol

  • Esophageal disease among childhood cancer survivors — a report from the Childhood Cancer Survivors Study.

    2021

    Citation: 68(8):e29043

    Author(s): Asdahl PH, Oeffinger KC, Albieri V, Hudson M, Leisenring WM, Donaldson S, Hasle H, Winther JF, Armstrong GT, Robison LL

    Journal: Pediatr Blood Cancer

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