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

    2025

    Citation: Epub Sep 9, 2025

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

    Journal: J Natl Cancer Inst

  • Cardiomyopathy screening adherence among Medicaid-enrolled long-term survivors of childhood cancer

    2025

    Citation: 14(15):e71116

    Author(s): Hu X, Castellino SM, Srivastava DK, Nathan PC, Armstrong GT, Snyder C, Kirchhoff AC, Ji X

    Journal: Cancer Med

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

    2025

    Citation: In Press

    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

  • Changes in Medicaid enrollment among adult survivors of childhood cancer after Medicaid expansion: a report from the Childhood Cancer Survivor Study

    2025

    Citation: Epub Oct 17, 2025

    Author(s): Ji X, Hu X, Nathan PC, Leisenring WM, Armstrong GT, Castellino SM, Kirchhoff AC

    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: 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

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