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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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  • Stroke impact on mortality and psychologic morbidity within the Childhood Cancer Survivor Study.

    2020

    Citation: 126(5):1051-1059

    Author(s): Mueller S, Kline C, Buerki RA, Chen Y, Yasui Y, Howell R, Oeffinger KC, Leisenring WM, Robison LL, Armstrong GT, Fullerton HJ, Krull KR.

    Journal: Cancer

  • Subsequent neoplasm risk associated with rare variants in DNA damage response and clinical radiation sensitivity syndrome genes in the Childhood Cancer Survivor Study.

    2020

    Citation: 4(2020)926-936

    Author(s): Morton LM, Karyadi DM, Hartley SW, Frone MN, Sampson JN, Howell RM, Neglia JP, Arnold MA, Hicks BD, Jones K, Zhu B, Dagnall CL, Karlins E, Yeager MS, Leisenring WM, Yasui Y, Turcotte LM, Smith SA, Weathers RE, Miller J, Sigel BS, Merino DM, Berrington de González A, Bhatia S, Robison LL, Tucker MA, Armstrong GT, Chanock SJ.

    Journal: JCO Precis Oncol

  • Traditional cardiovascular risk factors and individual prediction of cardiovascular events in childhood cancer survivors.

    2020

    Citation: 112(3):256-265

    Author(s): Chen Y, Chow EJ, Oeffinger KC, Border WL, Leisenring WM, Meacham LR, Mulrooney DA, Sklar CA, Stovall M, Robison LL, Armstrong GT, Yasui Y.

    Journal: J Natl Cancer Inst

  • Wearable respiratory monitoring and feedback for chronic pain in adult survivors of childhood cancer: a feasibility randomized controlled trial from the Childhood Cancer Survivor Study.

    2020

    Citation: 4:1014-1026

    Author(s): Alberts NM, Leisenring WM, Flynn JS, Whitton J, Gibson TM, Jibb L, McDonald A, Ford J, Moraveji N, Dear BF, Krull KR, Robison LL, Stinson JN, Armstrong GT.

    Journal: JCO Clin Cancer Inform

  • Alcohol consumption behaviors and neurocognitive dysfunction and emotional distress in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

    2019

    Citation: 114(2):226-235

    Author(s): Brinkman TM, Lown EA, Li C, Olsson IT, Marchak JG, Stuber ML, Vuotto S, Srivastava D, Nathan PC, Leisenring W, Armstrong GT, Robison LL, Krull KR.

    Journal: Addiction

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