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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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  • Prediction of breast cancer risk for adolescents and young adults with Hodgkin lymphoma

    2025

    Citation: 117(4):619-628

    Author(s): Roberti S, van Leeuwen FE, Diallo I, de Vathaire F, Schaapveld M, Leisenring WM, Howell RM, Armstrong GT, Moskowitz CS, Smith SA, Aleman BMP, Krul IM, Russell NS, Pfeiffer RM, Hauptmann M

    Journal: J Natl Cancer Inst

  • Melanoma among adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: 43(10):1219-1228

    Author(s): Rotz SJ, Stratton K, Leisenring WM, Smith SA, Howell RM, Bates JE, Pappo AS, Neglia JP, Armstrong GT, Turcotte LM

    Journal: J Clin Oncol

  • DNA damage response and repair genes and anthracycline-induced cardiomyopathy in childhood cancer survivors: a report from the Children’s Oncology Group and the Childhood Cancer Survivor Study

    2025

    Citation: In Press

    Author(s): Wang X, Singh P, Cejas RB, Zhou L, Sharafeldin N, Trainor PJ, Landier W, Cheng C, Hageman L, Wang F, Sapkota Y, Yasui Y, Hudson MM, Chow EJ, Armenian SH, Neglia JP, Hawkins DS, Ginsburg JP, Burridge PW, Armstrong GT, Bhatia S.

    Journal: Circ Genom Precis Med

  • Mortality after colorectal cancer among survivors of childhood cancer

    2025

    Citation: In Press

    Author(s): Major A, Chou J, Lam H, Kim KE, Turcotte LM, Leisenring W, Yasui Y, Neglia JP, Curry M, Howell RM, Oeffinger KC, Hodgson D, Nathan PC, Armstrong GT, Moskowitz CS, Henderson TO

    Journal: J Natl Cancer Inst

  • Comprehensive assessment of sexual function in male survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS)

    2025

    Citation: In Press

    Author(s): Marchak JG, Seidel KD, Cherven B, Klosky JL, Ritenour CWM, Leisenring WM, Sklar CA, Ford JS, Krull KR, Robison LL, Armstrong GT, Meacham LR

    Journal: Cancer

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