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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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  • Frailty and sleep in adult survivors of childhood cancer: a Childhood Cancer Survivor Study report

    2025

    Citation: 34(2):e70098

    Author(s): Daniel LC, Lubas MM, Wang H, Szklo-Coxe M, Ness KK, Williams AM, Mulrooney DA, Howell R, Leisenring W, Yasui Y, Robison LL, Armstrong GT, Chow EJ, Krull KR, Brinkman TM

    Journal: Psychooncology

  • Prevalence of carotid ultrasound screening in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: 131(1):e35591

    Author(s): Bryce Y, Whitton JA, Straton K, Leisenring WM, Chow EJ, Armstrong GT, Weil B, Dieffenbach B, Howell RM, Oeffinger KC, Nathan PC, Tonorezos ES

    Journal: Cancer

  • Body mass index, physical activity, and subsequent neoplasm risk among survivors of childhood cancer

    2025

    Citation: In Press

    Author(s): Joffe L, Mirzaei S, Bhatia S, Darji H, Ness KK, Onerup A, Ladas EJ, Im C, Lupo PJ, Oeffinger KC, Friedman DN, Howell RM, Conces MR, Arnold MA, Armstrong GT, Neglia JP, Yasui Y, Kadan-Lottick NS, Turcotte L

    Journal: JAMA Oncol

  • Trends in physical functioning in acute lymphoblastic leukemia and non-Hodgkin lymphoma survivors across three decades

    2025

    Citation: 19(2):496-506

    Author(s): Wilson CL, Bjornard KL, Partin RE, Kadan-Lottick NS, Nathan PC, Oeffinger KC, Hayashi RJ, Hyun G, Armstrong GT, Leisenring WM, Howell RM, Yasui Y, Dixon SB, Ehrhardt MJ, Robison LL, Ness KK

    Journal: J Cancer Surviv

  • Neurocognitive outcomes and functional independence in adult survivors of childhood medulloblastoma diagnosed over 3 decades

    2025

    Citation: 27(1):254-266

    Author(s): Papini C, Mirzaei S, Xing M, Olsson IT, Salloum R, de Blank PMK, Lange KR, King TZ, Srivastava S, Leisenring WM, Howell RM, Oeffinger KC, Robison LL, Armstrong GT, Krull KR, Brinkman TM

    Journal: Neuro Oncol

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