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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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  • Physical performance limitations in the Childhood Cancer Survivor Study Cohort.

    2009

    Citation: 27(14): 2382-9

    Author(s): Ness KK, Hudson MM, Ginsberg JP, Nagarajan R, Kaste SC, Marina N, Whitton J, Robison LL, Gurney JG.

    Journal: J Clin Oncol

  • Abnormal timing of menarche in survivors of central nervous system tumors:  A Report from the Childhood Cancer Survivor Study.

    2009

    Citation: 115(11):2562-70

    Author(s): Armstrong GT, Whitton JA, Gajjar A, Kun LE, Chow EJ, Stovall M, Leisenring W, Robison LL, Sklar CA.

    Journal: Cancer

  • Social outcomes in the Childhood Cancer Survivor Study cohort.

    2009

    Citation: 27(14): 2390-5

    Author(s): Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, Tersak JM, Ness KK.

    Journal: J Clin Oncol

  • Self-reported global function among adult survivors of childhood lower-extremity bone tumors: A Report from the Childhood Cancer Survivor Study (CCSS).

    2009

    Citation: 3(1):59-65

    Author(s): Nagarajan R, Mogil R, Neglia JP, Robison LL, Ness KK.

    Journal: J Cancer Surviv

  • Late recurrence in pediatric cancer: A Report from the Childhood Cancer Survivor Study.

    2009

    Citation: 101(24): 1709-20

    Author(s): Wasilewski-Masker K, Liu Q, Yasui Y, Leisenring W, Meacham LR, Hammond S, Meadows AT, Robison LL, Mertens AC.

    Journal: J Natl Cancer Inst

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