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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: 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

  • Intolerance of uncertainty, psychological symptoms, and pain in long-term childhood cancer survivors: a report from the Childhood Cancer Survivor Study

    2025

    Citation: Epub Jul 23, 2025

    Author(s): Alberts NM, Stratton KL, Leisenring WM, Pizzo A, Lamoureux E, Alschuler K, Flynn J, Krull KR, Jibb LA, Nathan PC, Olgin JE, Stinson JN, Armstrong GT

    Journal: J Cancer Surviv

  • 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: 43(36):3833-3843

    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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