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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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  • Long-term Neurologic Health and Psychosocial Function of Adults Survivors of Childhood Medulloblastoma/PNET: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 19(5):689-698

    Author(s): King AA, Seidel K, Di C, Leisenring WM, Perkins SM, Krull KR, Sklar CA, Green DM, Armstrong GT. Zeltzer LK, Wells E, Stovall M, Ullrich N, Oeffinger KC, Robison LL, Packer RJ.

    Journal: Neuro Oncol

  • Genome-wide Association Study Identifies Susceptibility Loci that Modify Radiation-Related Risk for Breast Cancer after Childhood Cancer.

    2017

    Citation: 109(11) djx058

    Author(s): Morton LM, Sampson JN, Armstrong GT, Chen TH, Hudson MM, Karlins E, Dagnall CL, Li SA, Wilson CL, Srivastava DK, Liu W, Kang G, Oeffinger KC, Henderson TO, Moskowitz CS, Gibson TM, Merino DM, Wong JR, Hammond S, Neglia JP, Turcotte LM, Miller J, Bowen L, Wheeler WA, Leisenring WM, Whitton JA, Burdette L, Chung C, Hicks BD, Jones K, Machiela MJ, Vogt A, Wang Z, Yeager M, Neale G, Lear M, Strong LC, Yasui Y, Stovall M, Weathers RE, Smith SA, Howell R, Davies SM, Radloff GA, Onel K, Berrington de González A, Inskip PD, Rajaraman P, Fraumeni JF Jr, Bhatia S, Chanock SJ, Tucker MA, Robison LL

    Journal: J Natl Cancer Inst

  • Radiation-associated breast cancer and gonadal hormone exposure: a report from the Childhood Cancer Survivor Study.

    2017

    Citation: 117(2):290-299

    Author(s): Moskowitz CS, Chou JF, Sklar CA, Barnea D, Ronckers CM, Friedman DN, Neglia JP, Turcotte L, Howell RM, Henderson TO, Armstrong GT, Leisenring WM, Robison LL, van Leeuwen FE, Pike MC, Oeffinger KC.

    Journal: Br J Cancer

  • Temporal Trends in Treatment and Subsequent Neoplasm Risk among 5-Year Survivors of Childhood Cancer, 1970-2015.

    2017

    Citation: 317(8):814-824

    Author(s): Turcotte LM, Liu Q, Yasui Y, Arnold MA, Hammond S, Howell RM, Smith SA, Weathers RE, Henderson TO, Gibson TM, Leisenring W, Armstrong GT, Robison LL, Neglia JP.

    Journal: JAMA

  • Predictors of Fatigue and Poor Sleep in Adult Survivors of Childhood Hodgkin’s Lymphoma: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 11(2):256-263

    Author(s): Rach AM, Crabtree VM, Brinkman TM, Zeltzer L, Marchak JG, Srivastava D, Tynes B, Lai JS, Robison LL, Armstrong GT, Krull KR.

    Journal: J Cancer Surviv

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