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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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  • Late morbidity and mortality in adult survivors of childhood glioma with Neurofibromatosis Type 1: report from the Childhood Cancer Survivor Study.

    2020

    Citation: 22(11):1794-1802

    Author(s): de Blank P, Li N, Fisher MJ, Ullrich NJ, Bhatia S, Yasui Y, Sklar CA, Leisenring W, Howell R, Oeffinger K, Hardy K, Okcu MF, Gibson TM, Robison LL, Armstrong GT, Krull KR.

    Journal: Genet Med

  • Adherence to surveillance for second malignant neoplasms and cardiac dysfunction in childhood cancer survivors: a Childhood Cancer Survivor Study.

    2020

    Citation: 38(15):1711-1722

    Author(s): Yan AP, Chen Y, Henderson TO, Oeffinger KC, Hudson MM, Gibson TM, Neglia JP, Leisenring WM, Ness KK, Ford JS, Robison LL, Armstrong GT, Yasui Y, Nathan PC.

    Journal: J Clin Oncol

  • Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 126(3):619-627

    Author(s): Ford JS, Tonorezos ES, Mertens AC, Hudson MM, Casillas J, Foster BM, Moskowitz CS, Smith SM, Chou JF, Buchanan G, Robison LL, Oeffinger KC.

    Journal: Cancer

  • Longitudinal pain and pain interference in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 126(12):2915-2923

    Author(s): Karlson CW, Alberts NM, Liu W, Brinkman TM, Annett RD, Mulrooney DA, Schulte F, Leisenring WM, Gibson TM, Howell RM, Srivastava D, Oeffinger KC, Robison LL, Armstrong GT, Zeltzer LK, Krull KR.

    Journal: Cancer

  • Cost-effectiveness of the International Late Effects of Childhood Cancer Guideline Harmonization Group screening guidelines to prevent heart failure in survivors of childhood cancer.

    2020

    Citation: 38(33):3851-3862

    Author(s): Ehrhardt MJ, Ward ZJ, Liu Q, Chaudhry A, Nohria A, Border W, Fulbright JM, Mulrooney DA, Oeffinger KC, Nathan PC, Leisenring WM, Constine LS, Gibson TM, Chow EJ, Howell RM, Robison LL, Armstrong GT, Hudson MM, Diller L, Yasui Y, Armenian SH, Yeh JM

    Journal: J Clin Oncol

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