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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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  • Model-based estimates of long-term survival, breast cancer, and cardiac risks in pediatric Hodgkin lymphoma survivors following historical reductions in radiotherapy

    2025

    Citation: In Press

    Author(s): Rogers JR, Ward ZJ, Stratton KL, Leisenring WM, Taylor SC, Armstrong GT, Chow EJ, Feraco A, Howell RM, Hudson MM, McMahon M, Morton LM, Oeffinger KC, Smith SA, Diller L, Yeh JM

    Journal: J Clin Oncol

  • Health outcomes beyond age 50 years in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: Epub Aug 11, 2025

    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

  • 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

  • Trans-ancestral genetic risk factors for treatment-related type 2 diabetes mellitus in survivors of childhood cancer

    2024

    Citation: 42(19):2306-2316

    Author(s): Im C, Neupane A, Baedke JL, Lenny B, Delaney A, Dixon SB, Chow EJ, Mostoufi-Moab S, Yang T, Richard MA, Gramatges MM, Lupo PJ, Sharafeldin N, Bhatia S, Armstrong GT, Hudson MM, Ness KK, Robison LL, Yasui Y, Wilson CL, Sapkota Y

    Journal: J Clin Oncol

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