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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

  • Psychological, educational, and social late effects in adolescent survivors of Wilms tumor: A report from the Childhood Cancer Survivor Study.

    2021

    Citation: 30(3):349-360

    Author(s): Foster RH, Hayashi RJ, Wang M, Liu W, Mohrmann C, Howell RM, Smith SA, Gibson TM, Srivastava D, Green DM, Oeffinger KC, Leisenring WM, Robison LL, Armstrong GT, Krull KR, Hardy KK.

    Journal: Psychooncology

  • Material, behavioral, and psychological financial hardship among survivors of childhood cancer in the Childhood Cancer Survivor Study.

    2021

    Citation: 127(17):3214-3222

    Author(s): Fair D, Park ER, Nipp RD, Rabin J, Hyland K, Kuhlthau K, Perez GK, Nathan PC, Armstrong GT, Oeffinger KC, Robison LL, Leisenring WM, Kirchhoff AC.

    Journal: Cancer

  • A comparison of late mortality among survivors of childhood cancer in the United States and United Kingdom.

    2021

    Citation: 113(5):562-571

    Author(s): Fidler-Benaoudia MM, Oeffinger KC, Yasui Y, Robsion LL, Winter DL, Reulen RC, Leisenring WM, Chen Y, Armstrong GT, Hawkins MM.

    Journal: J Natl Cancer Inst

  • Late-onset kidney failure in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2021

    Citation: 155:216-226

    Author(s): Dieffenbach BV, Liu Q, Murphy A, Stein D, Wu N, Madenci A, Leisenring W, Kadan-Lottick N, Christison-Lagay E, Goldsby R, Howell R, Smith S, Oeffinger K, Yasui Y, Armstrong G, Weldon C, Chow E, Weil B

    Journal: Eur J Cancer

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