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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 Childhood Cancer Survivor Study-Neurocognitive Questionnaire (CCSS-NCQ) Revised: Item Response Analysis and Concurrent Validity.

    2015

    Citation: 29(1):31-44

    Author(s): Kenzik KM, Huang IC, Brinkman TM, Baughman B, Ness KK, Shenkman EA, Hudson MM, Robison LL, Krull KR.

    Journal: Neuropsychology

  • 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

  • Aging and Risk of Severe, Disabling, Life-Threatening, and Fatal Events in the Childhood Cancer Survivor Study.

    2014

    Citation: 32(12):1218-27

    Author(s): Armstrong GT, Kawashima T, Leisenring W, Stratton K, Stovall M, Hudson MM, Sklar CA, Robison LL, Oeffinger KC.

    Journal: J Clin Oncol

  • Breast Cancer After Chest Radiation Therapy for Childhood Cancer.

    2014

    Citation: 32(21):2217-23

    Author(s): Moskowitz CS, Chou JF, Wolden SL, Bernstein JL, Malhotra J, Novetsky Friedman D, Mubdi NZ, Leisenring WM, Stovall M, Hammond S, Smith SA, Henderson TO, Boice JD, Hudson MM, Diller LR, Bhatia S, Kenney LB, Neglia JP, Begg CB, Robison LL, Oeffinger KC.

    Journal: J Clin Oncol

  • Cost-Effectiveness of the Children's Oncology Group Long-Term Follow-up Screening Guidelines for Childhood Cancer Survivors at Risk for Treatment-Related Heart Failure.

    2014

    Citation: 160(10):672-83

    Author(s): Wong FL, Bhatia S, Landier W, Francisco L, Leisenring W, Hudson MM, Armstrong GT, Mertens A, Stovall M, Robison LL, Lyman GH, Lipshultz SE, Armenian SH.

    Journal: Ann Intern Med

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