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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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  • Health-related quality of life in adult survivors of childhood Wilms tumor or neuroblastoma: A Report from the Childhood Cancer Survivor Study.

    2007

    Citation: 49(5):704-15

    Author(s): Nathan PC, Ness KK, Greenberg ML, Hudson M, Wolden S, Davidoff A, Laverdiere C, Mertens A, Whitton J, Robison LL, Zeltzer L, Gurney JG.

    Journal: Pediatr Blood Cancer

  • Physical impairment and social adaptation in adult survivors of childhood and adolescent rhabdomyosarcoma: A Report from the Childhood Cancer Survivors Study.

    2007

    Citation: 16(1):26-37

    Author(s): Punyko JA, Gurney JG, Scott Baker K, Hayashi RJ, Hudson MM, Liu Y, Robison LL, Mertens AC.

    Journal: Psychooncology

  • Physical inactivity in adult survivors of childhood acute lymphoblastic leukemia: A Report from the Childhood Cancer Survivor Study.

    2007

    Citation: 16(7):1356-63

    Author(s): Florin TA, Fryer GE, Miyoshi T, Weitzman M, Mertens AC, Hudson MM, Sklar CA, Emmons K, Hinkle A, Whitton J, Stovall M, Robison LL, Oeffinger KC.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Psychological distress in long-term survivors of solid tumors diagnosed in childhood: A Report from the Childhood Cancer Survivor Study.

    2007

    Citation: 49(1):47-51

    Author(s): Zebrack BJ, Zevon MA, Turk N, Nagarajan R, Whitton J, Robison LL, Zeltzer LK.

    Journal: Pediatr Blood Cancer

  • Secondary sarcomas in childhood cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2007

    Citation: 99(4):300-8

    Author(s): Henderson TO, Whitton J, Stovall M, Mertens AC, Mitby P, Friedman D, Strong LC, Hammond S, Neglia JP, Meadows AT, Robison L, Diller L.

    Journal: J Natl Cancer Inst

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