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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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  • 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

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

    2025

    Citation: Epub Dec 17, 2025

    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

  • Fear of cancer recurrence in adult survivors of childhood cancer

    2024

    Citation: 7(10):e2436144

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

    Journal: JAMA Netw Open

  • Association analysis of self-reported outcomes with a validated subset

    2024

    Citation: 43(4):642-655

    Author(s): Mirzaei S, Martínez JM, Chow EJ, Ness KK, Hudson MM, Armstrong GT, Yasui Y

    Journal: Stat Med

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