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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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  • The ENGAGE Study: a randomized trial optimizing uptake of germline cancer genetic services in childhood cancer survivors

    2025

    Citation: 55:101375

    Author(s): Henderson TO, Egleston B, Howe S, Allen MA, Mim R, Fleisher LG, Elkin EB, Oeffinger KC, Krull KR, Ofidis D, Mcleod B, Griffin H, Wood EM, Cacioppo CN, Brown S, Perpich M, Armstrong GT, Bradbury AR

    Journal: Lancet Reg Health Am

  • Polygenic risk scores, radiation treatment exposures and subsequent cancer risk in childhood cancer survivors

    2024

    Citation: 30(3):690-698

    Author(s): Gibson TM, Karyadi DM, Hartley SW, Arnold MA, Berrington de Gonzalez A, Conces MR, Howell RM, Kapoor V, Leisenring WM, Neglia JP, Sampson JN, Turcotte LM, Chanock SJ, Armstrong GT, Morton LM

    Journal: Nat Med

  • Adverse childhood experiences, resilience, and cardiovascular disease in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 33(8):1132-1136

    Author(s): Schwartz LF, Stratton KL, Leisenring WM, Rodriguez SM, Alston S, McDonald A, Vukadinovich C, Rinehardt D, Oeffinger KC, Chow EJ, Krull KR, Brinkman TM, Nathan PC, Tan MM, McCrae JS, Burkhardt T, Ness KK, Armstrong GT, Henderson TO

    Journal: Cancer Epidemiol Biomarkers Prev

  • Assisted reproductive technology use and outcomes in childhood cancer survivors

    2024

    Citation: 130(1):128-139

    Author(s): Keefe KW, Lanes A, Stratton K, Green DM, Chow EJ, Oeffinger KC, Barton S, Diller L, Yasui Y, Leisenring WM, Armstrong GT, Ginsburg ES

    Journal: Cancer

  • Association analysis of self-reported outcomes with a validated subset

    2024

    Citation: 43(4):642-655

    Author(s): Mirzaei S, Martínez JM, Chow EJ, Ness KK, Hudson MM, Armstrong GT, Yasui Y

    Journal: Stat Med

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