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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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  • Colorectal-specific radiation dose and chemotherapy risk for subsequent colorectal malignancies in childhood cancer survivors: a Childhood Cancer Survivor Study (CCSS) report

    2025

    Citation: 43(31):3403-3421

    Author(s): Owens CA, Ludmir EB, Liu Q, Qiu W, Gupta AC, Smith SA, Rigaud B, Brock KK, Bates JE, Meyers TG, Paulino AC, Peterson CB, Kry SF, Teepen JC, Ronckers CM, Neglia JP, Leisenring WM, Oeffinger KC, Nathan PC, Turcotte LM, Hodgson DC, Hudson MM, Robison LL, Moskowitz CS, Armstrong GT, Henderson TO, Yasui Y, Howell RM

    Journal: J Clin Oncol

  • 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

  • Symptom burden, healthcare utilization, and risky behaviors in survivors of the Childhood Cancer Survivor Study (CCSS): An observation cohort study

    2025

    Citation: In Press

    Author(s): Webster RT, Srivastava DK, Xie L, Darji H, Liu W, McGrady ME, Alberts NM, Brinkman TM, Ness KK, Fuemmeler B, Kunin-Batson A, Huang IC, Armstrong GT, Howell RM, Green DM, Yasui Y, Krull KR

    Journal: EClinicalMedicine

  • Psychosocial health and chronic health conditions among bereaved siblings: a report from the Childhood Cancer Survivor Study (CCSS)

    2025

    Citation: 72(12):e32076

    Author(s): Sharma P, George N, Srivastava D, Chow EJ, Alderfer MA, Leisenring W, Long KA, Lown AE, Oeffinger KC, Zeltzer LK, Armstrong GT, Krull KR, Brinkman TM, Buchbinder D

    Journal: Pediatr Blood Cancer

  • Investigation of DNA damage response genes validates the role of DNA repair in pediatric cancer risk and identifies SMARCAL1 as novel osteosarcoma predisposition gene

    2025

    Citation: Epub Oct 9, 2025

    Author(s): Oak N, Chen W, Blake A, Harrison L, O’Brien M, Previti C, Balasubramanian G, Maass K, Hirsch S, Penkert J, Jones BC, Schramm K, Nathrath M, Pajtler KW, Jones DTW, Witt O, Dirksen U, Li J, Sapkota Y, Ness KK, Guenther LM, Pfister SM, Kratz C, Wang Z, Armstrong GT, Hudson MM, Wu G, Autry RJ, Nichols KE, Sharma R

    Journal: J Clin Oncol

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