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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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  • 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

  • Osteonecrosis in adult survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 26(18):3038-45

    Author(s): Kadan-Lottick NS, Dinu I, Wasilweski-Masker K, Kaste S, Meacham LR, Mahajan A, Stovall M, Yasui Y, Robison LL, Sklar CA.

    Journal: J Clin Oncol

  • Fatigue and sleep disturbance in adult survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study (CCSS).

    2008

    Citation: 31(2):271-81

    Author(s): Mulrooney DA, Ness KK, Neglia JP, Whitton JA, Green DM, Zeltzer LK, Robison LL, Mertens AC.

    Journal: Sleep

  • Cause-specific mortality and second cancer incidence after non-Hodgkin lymphoma: A Report from the Childhood Cancer Survivor Study.

    2008

    Citation: 111(8):4014-21

    Author(s): Bluhm EC, Ronckers C, Hayashi RJ, Neglia JP, Mertens AC, Stovall M, Meadows AT, Mitby PA, Whitton JA, Hammond S, Barker JD, Donaldson SS, Robison LL, Inskip PD

    Journal: Blood

  • Prediction of second malignant neoplasm incidence in a large cohort of long-term survivors of childhood cancers.

    2008

    Citation: 50(5):1026-31

    Author(s): Dinu I, Liu Y, Leisenring W, Mertens AC, Neglia JP, Hammond S, Robison LL, Yasui Y.

    Journal: Pediatr Blood Cancer

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