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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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  • Solid organ transplantation after treatment for childhood cancer: a retrospective cohort analysis from the Childhood Cancer Survivor Study.

    2019

    Citation: 20(10):1420-1431

    Author(s): Dietz AC, Seidel K, Leisenring WM, Mulrooney DA, Tersak JM, Glick RD, Burnweit CA, Green DM, Diller LR, Smith SA, Howell RM, Stovall M, Armstrong GT, Oeffinger KC, Robison LL, Termuhlen AM.

    Journal: Lancet Oncol

  • Genome-wide association study in irradiated childhood cancer survivors identifies HTR2A for subsequent basal cell carcinoma.

    2019

    Citation: 139(9):2042-2045

    Author(s): Sapkota Y, Turcotte LM, Ehrhardt MJ, Howell RM, Arnold MA, Wilson CL, Leisenring W, Wang Z, Sampson J, Dagnall CL, Karlins E, Li SA, Hicks BD, Weathers R, Smith SA, Shelton K, Liu Q, Tucker MA, Chanock SJ, Zhang J, Hudson MM, Neglia JP, Armstrong GT, Robison LL, Morton L, Bhatia S, Yasui Y.

    Journal: J Invest Dermatol

  • Late health outcomes after contemporary Lymphome Malin de Burkitt therapy for mature B-cell non-Hodgkin lymphoma: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 37(28):2556-2570

    Author(s): Ehrhardt MJ, Chen Y, Sandlund JT, Bluhm EC, Hayashi RJ, Becktell K, Leisenring WM, Metzger ML, Ness KK, Krull KR, Oeffinger KC, Gibson TM, Cairo MS, Gross TG, Robison LL, Armstrong GT, Yasui Y, Hudson MM, Mulrooney DA.

    Journal: J Clin Oncol

  • Late morbidity and mortality among medulloblastoma survivors diagnosed across three decades: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 37(9):731-740

    Author(s): Salloum R, Chen Y, Yasui Y, Packer R, Leisenring W, Wells E, King A, Howell R, Gibson TM, Krull KR, Robison LL, Oeffinger KC, Fouladi M, Armstrong GT.

    Journal: J Clin Oncol

  • Late-onset anorectal disease and psychosocial impact in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 125(21):3873-3881

    Author(s): Madenci AL, Dieffenbach BV, Liu Q, Yoneoka D, Knell J, Gibson TM, Yasui Y, Leisenring WM, Howell RM, Diller LR, Krull KR, Armstrong GT, Oeffinger KC, Murphy AJ, Weil BR, Weldon CB.

    Journal: Cancer

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