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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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  • Predictors of Risk-based Medical Follow-up: A Report from the Childhood Cancer Survivor Study.

    2013

    Citation: 7(3): 379-91

    Author(s): Steele JR, Wall M, Salkowski N, Mitby P, Kawashima T, Yeazel MW, Hudson MM, Robison LL, Mertens AC.

    Journal: J Cancer Surviv

  • Physical activity among adult survivors of childhood lower-extremity sarcoma.

    2012

    Citation: 6(1):45-53

    Author(s): Wampler MA, Galatino ML, Huang S, Gilchrist LS, Marchese VG, Morris GS, Scalzitti DA, Hudson MM, Oeffinger KC, Stovall M, Leisenring WM, Armstrong GT, Robison LL, Ness KK.

    Journal: J Cancer Surviv

  • A genome-wide meta-analysis of nodular sclerosing Hodgkin lymphoma identifies risk loci at 6p21.32.

    2012

    Citation: 119(2):469-75

    Author(s): Cozen W, Li D, Best T, Van Den Berg DJ, Gourraud PA, Cortessis VK, Skol AD, Mack TM, Glaser SL, Weiss LM, Nathwani BN, Bhatia S, Schumacher FR, Edlund CK, Hwang AE, Slager SL, Fredericksen ZS, Strong LC, Habermann TM, Link BK, Cerhan JR, Robison LL, Conti DV, Onel K.

    Journal: Blood

  • Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: Implications for Affordable Care Act.

    2012

    Citation: 6(3): 251-9

    Author(s): Park ER, Kirchhoff AC, Zallen JP, Weissman JS, Pajolek H, Mertens AC, Armstrong GT, Robison LL, Donelan K, Recklitis CJ, Diller LR, Kuhlthau KA.

    Journal: J Cancer Surviv

  • Antioxidant Enzyme Polymorphisms and Neuropsychological Outcomes in Medulloblastoma Survivors: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 14(8): 1018-25

    Author(s): Brackett J, Krull KR, Scheurer ME, Liu W, Srivastava DK, Stovall M, Merchant TE, Packer RJ, Robison LL, Okcu MF.

    Journal: Neuro Oncol

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