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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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  • Treatment exposure-based risk-stratification for care of survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: 117(12):2580-2590

    Author(s): Dinan MA, Stratton KL, Leisenring WM, Yasui Y, Chow EJ, Tonorezos ES, Moskowitz CS, Yeh JM, Noyd D, Armstrong GT, Oeffinger KC

    Journal: J Natl Cancer Inst

  • 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

  • Diabetes mellitus and neurocognition: A report from the Childhood Cancer Survivor Study

    2025

    Citation: 131(16):e70011

    Author(s): Webster RT, Mirzaei S, Bhatia S, Srivastava DK, Mostoufi-Moab S, Dixon SB, Chow EJ, Armstrong GT, Krull KR, van der Plas E

    Journal: Cancer

  • Subsequent meningiomas among survivors of childhood cancer

    2025

    Citation: 8(12):e2548715

    Author(s): Bowers DC, Cooney T, Chen Y, Yuan Y, Galvin R, Im C, Leisenring W, Brady SW, Smith SA, Howell RM, Arnold MA, Conces M, Yasui Y, Diller LR, Armstrong GT, Neglia JP, Turcotte LM

    Journal: JAMA Netw Open

  • 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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