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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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  • Racial and ethnic disparities in neurocognitive, emotional and quality of life outcomes in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 125(20):3666-3677

    Author(s): Dixon SB, Li N, Yasui Y, Bhatia S, Casillas JN, Gibson TM, Ness KK, Porter J, Howell RM, Leisenring WM, Robison LL, Hudson MM, Krull KR, Armstrong GT.

    Journal: Cancer

  • Skin cancer early detection practices among adult survivors of childhood cancer treated with radiation.

    2019

    Citation: 139(9):1898-1905

    Author(s): Geller AC, Keske RR, Haneuse S, Davine JA, Emmons KM, Daniel CL, Gibson TM, Marghoob A, Mertens AC, McDonald MJ, Robison LL, Howell RM, Whitton JA, Coroiu A, Leisenring WM, Armstrong GT.

    Journal: J Invest Dermatol

  • Sleep, emotional distress, and physical health in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 28(4):903-912

    Author(s): Daniel LC, Wang M, Mulrooney DA, Srivastava D, Schwartz LA, Edelstein K, Brinkman TM, Zhou ES, Howell RM, Gibson TM, Leisenring W, Oeffinger KC, Neglia J, Robison LL, Armstrong GT, Krull KR.

    Journal: Psychooncology

  • Solid organ transplantation after treatment for childhood cancer: a retrospective cohort analysis from the Childhood Cancer Survivor Study.

    2019

    Citation: 20(10):1420-1431

    Author(s): Dietz AC, Seidel K, Leisenring WM, Mulrooney DA, Tersak JM, Glick RD, Burnweit CA, Green DM, Diller LR, Smith SA, Howell RM, Stovall M, Armstrong GT, Oeffinger KC, Robison LL, Termuhlen AM.

    Journal: Lancet Oncol

  • Subsequent neoplasms after a primary tumor in individuals with Neurofibromatosis type 1.

    2019

    Citation: 37(32):3050-3058

    Author(s): Bhatia S, Chen Y, Wong FL, Hageman L, Smith K, Korf B, Cannon A, Leidy DJ, Paz A, Andress JE, Friedman GK, Metrock K, Neglia JP, Arnold M, Turcotte LM, de Blank P, Leisenring W, Armstrong GT, Robison LL, Clapp DW, Shannon K, Nakamura JL, Fisher MJ.

    Journal: J Clin Oncol

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