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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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  • Specific causes of excess late mortality and association with modifiable risk factors among survivors of childhood cancer: a report from the Childhood Cancer Survivor Study cohort

    2023

    Citation: 401(10386):1447-1457

    Author(s): Dixon SB, Liu Q, Chow EJ, Oeffinger KC, Nathan PC, Howell RM, Leisenring WM, Ehrhardt MJ, Ness KK, Krull KR, Mertens AC, Hudson MM, Robison LL, Yasui Y, Armstrong GT

    Journal: Lancet

  • Subsequent female breast cancer risk associated with anthracycline chemotherapy for childhood cancer

    2023

    Citation: 29(9):2268-2277

    Author(s): Wang Y, Ronckers CM, van Leeuwen FE, Moskowitz CS, Leisenring W, Armstrong GT, de Vathaire F, Hudson MM, Kuehni CE, Arnold MA, Demoor-Goldschmidt C, Green DM, Henderson TO, Howell RM, Ehrhardt MJ, Neglia JP, Oeffinger KC, van der Pal HJH, Robison LL, Schaapveld M, Turcotte LM, Waespe N, Kremer LCM, Teepen JC

    Journal: Nat Med

  • Targeted long-read sequencing of the Ewing sarcoma 6p25.1 susceptibility locus identifies germline-somatic interactions with EWSR1-FLI1 binding

    2023

    Citation: 110(3):427-441

    Author(s): Lee OW, Rodrigues C, Lin S, Luo W, Jones K, Brown DW, Zhou W, Karlins E, Khan SM, Baulande S, Raynal V, Surdez D, Reynaud S, Rubio RA, Zaidi S, Grossetête S, Ballet S, Lapouble E, Laurence V, Pierron G, Gaspar N, Corradini N, Marec-Bérard P, Rothman N, Dagnall CL, Burdett L, Manning M, Wyatt K, Yeager M, Chari R, Leisenring WM, Kulozik AE, Kriebel J, Meitinger T, Strauch K, Kirchner T, Dirksen U, Mirabello L, Tucker MA, Tirode F, Armstrong GT, Bhatia S, Robison LL, Yasui Y, Romero-Pérez L, Hartmann W, Metzler M, Diver WR, Lori A, Freedman ND, Hoover RN, Morton LM, Chanock SJ, Grünewald TGP, Delattre O, Machiela MJ

    Journal: Am J Hum Genet

  • A novel locus on 6p21.2 for cancer treatment-induced cardiac dysfunction among childhood cancer survivors

    2022

    Citation: 114(8):1109-1116

    Author(s): Sapkota Y, Ehrhardt MJ, Qin N, Wang Z, Liu Q, Qiu W, Shelton K, Shao Y, Plyler E, Mulder HL, Easton J, Michael JR, Burridge PW, Wang X, Wilson CL, Jefferies JJ, Chow EJ, Oeffinger KC, Morton LM, Li C, Yang JJ, Zhang J, Bhatia S, Mulrooney DA, Hudson MM, Robison LL, Armstrong GT, Yasui Y

    Journal: J Natl Cancer Inst

  • Association of changes in cancer therapy over 3 decades with risk of subsequent breast cancer among female childhood cancer survivors: a report from the Childhood Cancer Survivor Study (CCSS)

    2022

    Citation: 8(12):1765–1774

    Author(s): Henderson TO, Liu Q, Turcotte LM, Neglia JP, Leisenring WM, Hodgson D, Diller L, Kenney L, Morton L, Berrington de Gonzalez A, Arnold M, Bhatia S, Howell RM, Smith SA, Robison LL, Armstrong GT, Oeffinger KC, Yasui Y, Moskowitz CS

    Journal: JAMA Oncol

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