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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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  • Consistent physical activity and future neurocognitive problems in adult survivors of childhood cancers: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 38(18):2014-2052

    Author(s): Barlow-Krelina E, Chen Y, Yasui Y, Till C, Gibson TM, Ness KK, Leisenring WM, Howell RM, Nathan PC, Oeffinger KC, Robison LL, Armstrong GT, Krull KR, Edelstein K.

    Journal: J Clin Oncol

  • Stroke impact on mortality and psychologic morbidity within the Childhood Cancer Survivor Study.

    2020

    Citation: 126(5):1051-1059

    Author(s): Mueller S, Kline C, Buerki RA, Chen Y, Yasui Y, Howell R, Oeffinger KC, Leisenring WM, Robison LL, Armstrong GT, Fullerton HJ, Krull KR.

    Journal: Cancer

  • Frequency of pathogenic germline variants in cancer-susceptibility genes in patients with osteosarcoma.

    2020

    Citation: 6(5):724-734

    Author(s): Mirabello L, Zhu B, Koster R, Karlins E, Dean M, Yeager M, Gianferante M, Spector L, Morton L, Karyadi D, Robison LL, Armstrong GT, Bhatia S, Song L, Pankratz N, Pinheiro M, Gastier-Foster JM, Gorlick R, de Toledo SRC, Petrilli AS, Patiño-Garcia A, Lecanda F, Gutierrez-Jimeno M, Serra M, Hattinger C, Picci P, Scotlandi K, Flanagan AM, Tirabosco R, Amary AF, Kurucu N, Ilhan IE, Ballinger ML, Thomas DM, Barkauskas DA, Mejia-Baltodano G, Valverde P, Hicks BD, Zhu B, Wang M, Hutchinson AA, Tucker M, Sampson J, Landi MT, Freedman ND, Gapstur S, Carter B, Hoover RN, Chanock SJ, Savage SA.

    Journal: JAMA Oncol

  • Subsequent neoplasm risk associated with rare variants in DNA damage response and clinical radiation sensitivity syndrome genes in the Childhood Cancer Survivor Study.

    2020

    Citation: 4(2020)926-936

    Author(s): Morton LM, Karyadi DM, Hartley SW, Frone MN, Sampson JN, Howell RM, Neglia JP, Arnold MA, Hicks BD, Jones K, Zhu B, Dagnall CL, Karlins E, Yeager MS, Leisenring WM, Yasui Y, Turcotte LM, Smith SA, Weathers RE, Miller J, Sigel BS, Merino DM, Berrington de González A, Bhatia S, Robison LL, Tucker MA, Armstrong GT, Chanock SJ.

    Journal: JCO Precis Oncol

  • Reduced morbidity and mortality in survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 38(29):3418-3429

    Author(s): Dixon SB, Chen Y, Yasui Y, Pui C, Hunger SP, Silverman LB, Ness KK, Green DM, Howell RM, Leisenring WM, Kaden-Lottick NS, Krull KR, Oeffinger KC, Neglia JP, Mertens AC, Hudson MM, Robison LL, Armstrong GT, Nathan PC.

    Journal: J Clin Oncol

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