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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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  • 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

  • Collaborative Research in Childhood Cancer Survivorship – the Current Landscape.

    2015

    Citation: 33(27):3055-64

    Author(s): Bhatia S, Armenian SH, Armstrong GT, Van Dulmen-den Broeder E, Hawkins MM, Kremer LC, Keuhni CE, Olsen JH, Robison LL, Hudson MM.

    Journal: J Clin Oncol

  • Supplemental Security Income and Social Security Disability Insurance Coverage among Adult, Long-Term Childhood Cancer Survivors.

    2015

    Citation: 107(6):djv057

    Author(s): Kirchhoff AC, Parsons HM, Kuhlthau KA, Leisenring W, Donelan K, Warner EL, Armstrong GT, Robison LL, Oeffinger KC, Park ER.

    Journal: J Natl Cancer Inst

  • Health and Well-Being in Adolescent Survivors of Early Childhood Cancer: A Report from the Childhood Cancer Survivor Study.

    2014

    Citation: 23(3):266-75

    Author(s): Mertens AC, Brand S, Ness KK, Li Z, Mitby PA, Riley A, Patenaude AF, Zeltzer L.

    Journal: Psychooncology

  • A Meta-Analysis of Hodgkin Lymphoma Reveals 19p13.3 TCF3 as a Novel Susceptibility Locus.

    2014

    Citation: 5:3856

    Author(s): Cozen W, Timofeeva MN, Li D, Diepstra A, Hazelett D, Delahaye-Sourdeix M, Edlund CK, Franke L, Rostgaard K, Van Den Berg DJ, Cortessis VK, Smedby KE, Glaser SL, Westra HJ, Robison LL, Mack TM, Ghesquieres H, Hwang AE, Nieters A, de Sanjose S, Lightfoot T, Becker N, Maynadie M, Foretova L, Roman E, Benavente Y, Rand KA, Nathwani BN, Glimelius B, Staines A, Boffetta P, Link BK, Kiemeney L, Ansell SM, Bhatia S, Strong LC, Galan P, Vatten L, Habermann TM, Duell EJ, Lake A, Veenstra RN, Visser L, Liu Y, Urayama KY, Montgomery D, Gaborieau V, Weiss LM, Byrnes G, Lathrop M, Cocco P, Best T, Skol AD, Adami HO, Melbye M, Cerhan JR, Gallagher A, Taylor GM, Slager SL, Brennan P, Coetzee GA, Conti DV, Onel K, Jarrett RF, Hjalgrim H, van den Berg A, McKay JD.

    Journal: Nat Commun

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