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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

  • Genetic contribution to treatment-related dyslipidemia in adult survivors of childhood cancer: findings from the CCSS, SJLIFE, and DCCSS-LATER cohorts

    2025

    Citation: 34(11):2068-2076

    Author(s): Bolier M, Pluimakers VG, Broer L, Neggers SJCMM, de Winter DTC, Wang F, Baedke JL, Uitterlinden AG, Petrykey K, Kremer LC, Loonen JL, Louwerens M, van der Pal HJ, Feijen ELA, Oeffinger KC, Howell RM, Chow EJ, Leisenring WM, Gramatges MM, Mortin LM, Robison LL, Hudson MM, Ness KK, Sapkota Y, Armstrong GT, Bhatia S, Yasui Y, van den Heuvel-Eibrink MM

    Journal: Cancer Epidemiol Biomarkers Prev

  • Germline rare variants in cancer susceptibility genes and subsequent neoplasm risk after childhood cancer

    2025

    Citation: 117(12):2545-2555

    Author(s): Zamani SA, Karyadi DM, Hartley SW, Gibson TM, Sampson JN, Kraft P, Chanock SJ, Morton LM

    Journal: J Natl Cancer Inst

  • Health outcomes beyond age 50 years in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: 43(27):2998-3010

    Author(s): Bhandari R, Chen Y, Chow EJ, Howell RM, Kenney LB, Krull KR, Leisenring W, Nathan PC, Neglia JP, Ness KK, Oeffinger KC, Snyder C, Turcotte LM, Wong FL, Yasui Y, Armstrong GT, Armenian SH

    Journal: J Clin Oncol

  • Health outcomes in childhood cancer survivors with congenital anomalies in the Childhood Cancer Survivor Study

    2025

    Citation: 34(12):2228-2238

    Author(s): Janitz AE, Qiu W, Schraw JM, Mostoufi-Moab S, Mirabello L, Stewart DR, Neglia JP, Turcotte LM, Bhatia S, Yasui Y, Chow EJ, Armstrong GT, Lupo PJ

    Journal: Cancer Epidemiol Biomarkers Prev

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