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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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  • Assessing delivery of and attitudes toward a randomized intervention to increase mammography uptake among childhood cancer survivors: A report from the Childhood Cancer Survivor Study

    2025

    Citation: Epub Nov 19, 2025

    Author(s): Wu HV, Oeffinger KC, Chou JF, Henderson TO, Hudson MM, Diller LR, McDonald AJ, Ford J, Mubdi NZ, Rinehart D, Vukadinovich C, Elkin EB, Leisenring WM, Armstrong GT, Ford JS, Moskowitz CS

    Journal: J Psychosoc Oncol

  • Late morbidity and mortality in survivors of childhood ependymoma: A report from the Childhood Cancer Survivor Study (CCSS)

    2025

    Citation: In Press

    Author(s): Lange KR, de Blank P, Xing M, Mirzaei S, Srivastava DK, Oeffinger KC, Neglia J, Krull K, Nathan PC, Howell R, Ness KK, Turcotte LM, Leisenring WM, Armstrong GT, Brinkman T, Bowers DC, Okcu MF

    Journal: Cancers

  • 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

  • Potential of exercise for prevention of cardiovascular disease in survivors of childhood Hodgkin lymphoma

    2025

    Citation: In Press

    Author(s): Onerup A, Liu Q, Izumi S, Martínez-Martínez JM, Dixon SB, Chow EJ, Hudson MM, Snyder C, Nathan PC, Armstrong GT, Ness KK, Yasui Y

    Journal: JACC CardioOncol

  • 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

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