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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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  • Estimating the Burden of Recurrent Events in the Presence of Competing Risks: The Method of Mean Cumulative Count.

    2015

    Citation: 181(7):532-40

    Author(s): Dong H, Robison LL, Leisenring WM, Martin LJ, Armstrong GT, Yasui Y.

    Journal: Am J Epidemiol

  • Psychosocial and Neurocognitive Outcomes in Adult Survivors  of Adolescent and Early Young Adult Cancer: A Report from the Childhood Cancer Survivor Study.

    2015

    Citation: 33(23):2545-52

    Author(s): Prasad PK, Hardy KK, Zhang N, Edelstein K, Srivastava D, Zeltzer L, Stovall M, Seibel NL, Leisenring W, Armstrong GT, Robison LL, Krull K.

    Journal: J Clin Oncol

  • Individual Prediction of Heart Failure Among Childhood Cancer Survivors.

    2015

    Citation: 33(5):394-402

    Author(s): Chow EJ, Chen Y, Kremer LC, Breslow NE, Hudson MM, Armstrong GT, Border WL, Feijen EA, Green DM, Meacham LR, Meeske KA, Mulrooney DA, Ness KK, Oeffinger KC, Sklar CA, Stovall M, van der Pal HJ, Weathers RE, Robison LL, Yasui Y.

    Journal: J Clin Oncol

  • 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

  • Chimeric EWSR1-FLI1 regulates the Ewing sarcoma susceptibility gene EGR2 via a GGAA microsatellite.

    2015

    Citation: 47(9):1073-1078

    Author(s): Grünewald TG, Bernard V, Gilardi-Hebenstreit P, Raynal V, Surdez D, Aynaud MM, Mirabeau O, Cidre-Aranaz F, Tirode F, Zaidi S, Perot G, Jonker AH, Lucchesi C, Le Deley MC, Oberlin O, Marec- Bérard P, Véron AS, Reynaud S, Lapouble E, Boeva V, Rio Frio T, Alonso J, Bhatia S, Pierron G, Cancel-Tassin G, Cussenot O, Cox DG, Morton LM, Machiela MJ, Chanock SJ, Charnay P, Delattre O.

    Journal: Nat Genet

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