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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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  • “Job lock” among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 4(5): 707-711

    Author(s): Kirchhoff AC, Nipp R, Warner EL, Kuhlthau K, Leisenring WM, Donelan K, Rabin J, Perez GK, Oeffinger KC, Nathan PC, Robison LL, Armstrong GT, Park ER.

    Journal: JAMA Oncol

  • Late infection-related mortality in asplenic survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 36(16):1571-1578

    Author(s): Weil BR, Madenci AL, Liu Q, Howell RM, Gibson TM, Yasui Y, Neglia JP, Leisenring WM, Smith SA, Tonorezos ES, Friedman DN, Constine LS, Tinkle CL, Diller LR, Armstrong GT, Oeffinger KC, Weldon CB.

    Journal: J Clin Oncol

  • Longitudinal assessment of late-onset neurologic conditions in survivors of childhood Central Nervous System tumors: a Childhood Cancer Survivor Study report.

    2018

    Citation: 20(1):132-142

    Author(s): Wells EM, Ullrich NJ, Seidel K, Leisenring W, Sklar CA, Armstrong GT, Diller L, King A, Krull KR, Neglia JP, Stovall M, Whelan K, Oeffinger KC, Robison LL, Packer RJ.

    Journal: Neuro Oncol

  • Long-term psychological and educational outcomes for survivors of neuroblastoma: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 124(15):3220-3230

    Author(s): Zheng DJ, Krull KR, Chen Y, Diller L, Yasui Y, Leisenring WM, Brouwers P, Howell R, Lai JS, Balsamo L, Oeffinger KC, Robison LL, Armstrong GT, Kadan-Lottick NS.

    Journal: Cancer

  • Long-term risk of venous thromboembolism in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 36(31):3144-3151

    Author(s): Madenci AL, Weil BR, Liu Q, Murphy AJ, Gibson TM, Yasui Y, Leisenring WM, Howell RM, Tinkle CL, Nekhlyudov L, Diller LR, Armstrong GT, Oeffinger KC, Weldon CB.

    Journal: J Clin Oncol

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