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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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  • Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 17(2):435-46

    Author(s): Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, Mertens AC, Robison LL, Ness KK.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Reliability and validity of the Childhood Cancer Survivor Study Neurocognitive Questionnaire.

    2008

    Citation: 113(8):2188-97

    Author(s): Krull KR, Gioia G, Ness KK, Ellenberg L, Recklitis C, Leisenring W, Huang S, Stovall M, Robison LL, Zeltzer L.

    Journal: Cancer

  • The impact of limitations in physical, executive, and emotional function on health-related quality of life among adult survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 89(1):128-36

    Author(s): Ness KK, Gurney JG, Zeltzer LK, Leisenring W, Mulrooney DA, Nathan PC, Robison LL, Mertens AC.

    Journal: Arch Phys Med Rehabil

  • Timing of menarche among survivors of childhood acute lymphoblastic leukemia: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 50(4):854-8

    Author(s): Chow EJ, Friedman DL, Yasui Y, Whitton JA, Stovall M, Robison LL, Sklar CA.

    Journal: Pediatr Blood Cancer

  • Twenty years follow-up among survivors of childhood and young adult acute myeloid leukemia: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 112(9):2071-9

    Author(s): Mulrooney DA, Dover DC, Li S, Yasui Y, Ness KK, Mertens AC, Neglia JP, Sklar CA, Robison LL, Davies SM.

    Journal: Cancer

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