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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 unmet emotional, care/support, and information needs of adult survivors of pediatric malignancies.

    2016

    Citation: 10(4):743-58

    Author(s): Cox CL, Zhu L, Ojha RP, Li C, Srivastava DK, Riley BB, Hudson MM, Robison LL.

    Journal: J Cancer Surviv

  • Thyroid Cancer after Childhood Exposure to External Radiation: An Updated Pooled Analysis of 12 Studies.

    2016

    Citation: 185(5):473-84

    Author(s): Veiga LH, Holmberg E, Anderson H, Pottern L, Sadetzki S, Adams MJ, Sakata R, Schneider AB, Inskip P, Bhatti P, Johansson R, Neta G, Shore R, de Vathaire F, Damber L, Kleinerman R, Hawkins MM, Tucker M, Lundell M, Lubin JH.

    Journal: Radiat Res

  • Tobacco Use Among Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study.

    2016

    Citation: 63(2):326-33

    Author(s): Buchbinder D, Oeffinger K, Franco-Villalobos C, Yasui Y, Alderfer MA, Armstrong GT, Casillas J, Ford J, Krull KR, Leisenring W, Recklitis C, Robison LL, Zeltzer LK, Lown EA.

    Journal: Pediatr Blood Cancer

  • Advancing Survivors' Knowledge (ASK) about Skin Cancer Study: Study Protocol for a Randomized Controlled Trial.

    2015

    Citation: 16:109

    Author(s): Daniel CL, Armstrong GT, Keske RR, Davine JA, McDonald AJ, Sprunck-Harrild KM, Coleman C, Haneuse SJ, Mertens AC, Emmons KM, Marghoob AA, Elkin EB, Dusza SW, Robison LL, Geller AC.

    Journal: Trials

  • Age-Dependent Changes in Health Status in the Childhood Cancer Survivor Cohort.

    2015

    Citation: 33(5):479-91

    Author(s): Hudson MM, Oeffinger KC, Jones K, Brinkman TM, Krull KR, Mulrooney DA, Mertens A, Castellino SM, Casillas J, Gurney JG, Nathan PC, Leisenring W, Robison LL, Ness KK.

    Journal: J Clin Oncol

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