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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

    2026

    Citation: In Press

    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

  • Breast cancer recurrence and mortality among survivors of childhood cancer

    2026

    Citation: Epub Jan 7, 2026

    Author(s): Im C, Hasan H, Srinivasan A, Stene E, McDonald AJ, Moskowitz CS, Henderson TO, Armstrong GT, Yasui Y, Nanda R, Oeffinger KC, Neglia JP, Blaes A, Turcotte LM

    Journal: J Natl Cancer Inst

  • Neurocognitive impairment and financial hardship in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2026

    Citation: Epub Jan 31, 2026

    Author(s): Zheng DJ, Bhatia S, Mirzaei S, Aplenc R, Armstrong GT, Bona K, Brinkman TM, Brouwers P, Edelstein K, Getz K, Huang I, Kirchhoff AC, Mostoufi-Moab S, Park ER, Snyder C, Yabroff KR, Yasui Y, Krull K, Nathan PC

    Journal: J Natl Cancer Inst

  • Benefits, harms, and burden of colorectal cancer screening among childhood cancer survivors previously treated with abdominopelvic radiation

    2026

    Citation: 44(4):286-299

    Author(s): Yeh JM, Seguin CL, Stratton KL, Leisenring WM, Armstrong GT, Henderson TO, Hudson MM, Nathan PC, Neglia JP, Oeffinger KC, Diller LR, Knudsen AB

    Journal: J Clin Oncol

  • 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

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