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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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  • Characterization of chronic pain, pain interference, and daily pain experiences in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 165(11):2530-2543

    Author(s): Alberts NM, Leisenring W, Whitton J, Stratton K, Jibb L, Flynn J, Pizzo A, Brinkman TM, Birnie K, Gibson TM, McDonald A, Ford J, Olgin JE, Nathan PC, Stinson JN, Armstrong GT

    Journal: Pain

  • Temporal changes in treatment and late mortality and morbidity in adult survivors of childhood Glioma: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 5(4):590-600

    Author(s): De Blank PMK, Lange KR, Xing M, Mirzaei Salehabadi S, Srivastava D, Brinkman TM, Ness KK, Oeffinger KC, Neglia J, Krull KR, Nathan PC, Howell R, Turcotte LM, Leisenring W, Armstrong GT, Okcu MF, Bowers DC

    Journal: Nat Cancer

  • Statistical analysis of self-reported health conditions in cohort studies: handling of missing onset age

    2024

    Citation: 173(2024):111458

    Author(s): Mirzaei S, Martínez JM, Izumi A, Mori M, Amstrong GT, Yasui Y

    Journal: J Clin Epidemiol

  • Exercise and QUality diet after Leukemia: a randomized weight loss trial among adult survivors of childhood leukemia in the Childhood Cancer Survivor Study

    2024

    Citation: 33(9):1158-1166

    Author(s): Friedman DN, Chou JF, Clark JM, Moskowitz CS, Ford JS, Armstrong GT, Mubdi N, McDonald A, Nathan PC, Sklar CA, Ramanathan L, Robison LL, Oeffinger KC, Tonorezos ES

    Journal: Cancer Epidemiol Biomarkers Prev

  • Financial hardship and neighborhood socioeconomic disadvantage in long-term childhood cancer survivors

    2024

    Citation: 8(3):pkae033

    Author(s): Fauer AJ, Qiu W, Huang IC, Ganz PA, Casillas JN, Yabroff RY, Armstrong GT, Leisenring W, Howell R, Howell CR, Kirchhoff AC, Yasui Y, Nathan PC

    Journal: JNCI Cancer Spectr

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