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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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  • Mortality after colorectal cancer among survivors of childhood cancer

    2025

    Citation: Epub Aug 21, 2025

    Author(s): Major A, Chou J, Lam H, Kim KE, Turcotte LM, Leisenring W, Yasui Y, Neglia JP, Curry M, Howell RM, Oeffinger KC, Hodgson D, Nathan PC, Armstrong GT, Moskowitz CS, Henderson TO

    Journal: J Natl Cancer Inst

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

    2025

    Citation: Epub Aug 25, 2025

    Author(s): Bolier M, Pluimakers VG, Broer L, Neggers SJ, de Winter DT, 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

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

    2025

    Citation: In Press

    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

  • SMARCAL1 is a new osteosarcoma predisposition gene

    2025

    Citation: In Press

    Author(s): Rafati M, Guenther LM, Egolf LE, Gianferante DM, Kim J, Wang K, Zhu B, Spector LG, Anderson N, Janeway KA, Barkauskas DA, Hawkins DS, Patiño-Garcia A, Lupo PJ, Scheurer ME, Morton L, Armstrong GT, Sapkota Y, Gramatges MM, Serra M, Hattinger C, Scotlandi K, Andrulis IL, Wunder JS, Ballinger ML, Thomas DM, Yeager M, Dean M, Stewart DR, Vogt A, Liu J, Hicks BD, Huang W, Landi MT, Lori A, Diver WR, Savage SA, Chanock SJ, Mirabello L

    Journal: J Natl Cancer Inst

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

    2025

    Citation: In Press

    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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