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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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  • Temporal trends of subsequent CNS malignancies among survivors of childhood cancer

    2025

    Citation: Epub Jan 10, 2025

    Author(s): Galvin RT, Chen Y, Yuan Y, Cooney T, Howell R, Smith S, Arnold MA, Conces M, Leisenring W, Armstrong GT, Neglia JP, Turcotte LM

    Journal: J Natl Cancer Inst

  • Trends in physical functioning in acute lymphoblastic leukemia and non-Hodgkin lymphoma survivors across three decades

    2025

    Citation: 19(2):496-506

    Author(s): Wilson CL, Bjornard KL, Partin RE, Kadan-Lottick NS, Nathan PC, Oeffinger KC, Hayashi RJ, Hyun G, Armstrong GT, Leisenring WM, Howell RM, Yasui Y, Dixon SB, Ehrhardt MJ, Robison LL, Ness KK

    Journal: J Cancer Surviv

  • Neurocognitive outcomes and functional independence in adult survivors of childhood medulloblastoma diagnosed over 3 decades

    2025

    Citation: 27(1):254-266

    Author(s): Papini C, Mirzaei S, Xing M, Olsson IT, Salloum R, de Blank PMK, Lange KR, King TZ, Srivastava S, Leisenring WM, Howell RM, Oeffinger KC, Robison LL, Armstrong GT, Krull KR, Brinkman TM

    Journal: Neuro Oncol

  • Treatment, toxicity, and mortality after subsequent breast cancer in female survivors of childhood cancer

    2025

    Citation: 16(1):3088

    Author(s): Im C, Hasan H, Steen E, Monick S, Rader RK, Sheade J, Wolfe H, Lu Z, Spector LG, McDonald AJ, Nolan V, Arnold MA, Conces MR, Moskowitz CS, Henderson TO, Robison LL, Armstrong GT, Yasui Y, Nanda R, Oeffinger KC, Neglia JP, Blaes A, Turcotte LM

    Journal: Nat Commun

  • Prediction of breast cancer risk for adolescents and young adults with Hodgkin lymphoma

    2025

    Citation: 117(4):619-628

    Author(s): Roberti S, van Leeuwen FE, Diallo I, de Vathaire F, Schaapveld M, Leisenring WM, Howell RM, Armstrong GT, Moskowitz CS, Smith SA, Aleman BMP, Krul IM, Russell NS, Pfeiffer RM, Hauptmann M

    Journal: J Natl Cancer Inst

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