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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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  • Peer-delivered smoking counseling for childhood cancer survivors increases rate of cessation: The Partnership for Health Study.

    2005

    Citation: 23(27):6516-23

    Author(s): Emmons KM, Puleo E, Park E, Gritz ER, Butterfield RM, Weeks JC, Mertens A, Li FP.

    Journal: J Clin Oncol

  • Long-term medical effects of childhood and adolescent rhabdomyosarcoma: A Report from the Childhood Cancer Survivor Study.

    2005

    Citation: 44(7):643-53

    Author(s): Punyko JA, Mertens AC, Gurney JG, Yasui Y, Donaldson SS, Rodeberg DA, Raney RB, Stovall M, Sklar CA, Robison LL, Baker KS.

    Journal: Pediatr Blood Cancer

  • Minority adult survivors of childhood cancer: A comparison of long-term outcomes, health care utilization, and health-related behaviors from the Childhood Cancer Survivor Study.

    2005

    Citation: 23(27):6499-507

    Author(s): Castellino SM, Casillas J, Hudson MM, Mertens AC, Whitton J, Brooks SL, Zeltzer LK, Ablin A, Castleberry R, Hobbie W, Kaste S, Robison LL, Oeffinger KC.

    Journal: J Clin Oncol

  • Increased risk of cancer among siblings of long-term childhood cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2005

    Citation: 14(8):1922-7

    Author(s): Friedman DL, Kadan-Lottick NS, Whitton J, Mertens AC, Yasui Y, Liu Y, Meadows AT, Robison LL, Strong LC.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Primary thyroid cancer after a first tumour in childhood (The Childhood Cancer Survivor Study): A nested case-control study.

    2005

    Citation: 365(9476):2014-23

    Author(s): Sigurdson AJ, Ronckers CM, Mertens AC, Stovall M, Smith SA, Liu Y, Berkow RL, Hammond S, Neglia JP, Meadows AT, Sklar CA, Robison LL, Inskip PD.

    Journal: Lancet

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