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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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  • Genetic susceptibility to radiation-induced breast cancer after Hodgkin Lymphoma.

    2019

    Citation: 133(10):1130-1139

    Author(s): Opstal-van Winden AWJ, de Haan HG, Hauptmann M, Schmidt MK, Broeks A, Russell NS, Janus CPM, Krol ADG, van der Bann FH, De Bruin ML, van Eggermond AM, Dennis J, Anton Culver H, Haiman CA, Sawyer EJ, Cox A, Devilee P, Hooning MJ, Peto J, Couch FJ, Pharoah P, Orr N, Easton DF, Aleman BMP, Strong LC, Bhatia S, Cooke R, Robison LL, Swerdlow AJ, van Leeuwen FE.

    Journal: Blood

  • Subsequent neoplasms after a primary tumor in individuals with Neurofibromatosis type 1.

    2019

    Citation: 37(32):3050-3058

    Author(s): Bhatia S, Chen Y, Wong FL, Hageman L, Smith K, Korf B, Cannon A, Leidy DJ, Paz A, Andress JE, Friedman GK, Metrock K, Neglia JP, Arnold M, Turcotte LM, de Blank P, Leisenring W, Armstrong GT, Robison LL, Clapp DW, Shannon K, Nakamura JL, Fisher MJ.

    Journal: J Clin Oncol

  • Derivation of anthracycline and anthraquinone equivalence ratios to doxorubicin for late-onset cardiotoxicity.  

    2019

    Citation: 5(6):864-871

    Author(s): Feijen EAM, Leisenring WM, Stratton KL, Ness KK, van der Pal HJH, van Dalen EC, Armstrong GT, Aune GJ, Green DM, Hudson MM, Loonen J, Oeffinger KC, Robison LL, Yasui Y, Kremer LCM, Chow EJ.

    Journal: JAMA Oncol

  • Neuropsychological and socioeconomic outcomes in adult survivors of pediatric low-grade glioma.

    2019

    Citation: 125(17):3050-3058

    Author(s): Ris MD, Leisenring WM, Goodman P, Di C, Noll J, Levy W, Robison LL, Armstrong GT.

    Journal: Cancer

  • Regression Analysis of Incomplete Data from Event History Studies with the Proportional Rates Model.

    2018

    Citation: 11(1):91-97

    Author(s): Yu G, Zhu L, Sun J, Robison LL.

    Journal: Stat Interface

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