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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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  • Chronic Medical Conditions in Adult Survivors of Retinoblastoma: Results of the Retinoblastoma Survivor Study.

    2016

    Citation: 122(5):773-81

    Author(s): Friedman DN, Chou JF, Oeffinger KC, Kleinerman RA, Ford JS, Sklar CA, Li Y, McCabe MS, Robison LL, Marr BP, Abramson DH, Dunkel IJ.

    Journal: Cancer

  • Radiation-related New Primary Solid Cancers in the Childhood Cancer Survivor Study: Comparative Radiation Dose Response and Modification of Treatment Effects

    2016

    Citation: 94(4):800-7

    Author(s): Inskip PD, Sigurdson AJ, Veiga L, Bhatti P, Ronckers C, Rajaraman P, Boukeris H, Stovall M, Smith S, Hammond S, Henderson TO, Watt TC, Mertens AC, Leisenring W, Stratton K, Whitton J, Donaldson SS, Armstrong GT, Robison LL, Neglia JP.

    Journal: Int J Radiat Oncol Biol Phys

  • Racial/Ethnic Differences in Risk of Adverse Outcomes Among Childhood Cancer Survivors: The Childhood Cancer Survivor Study.

    2016

    Citation: 34(14):1634-43

    Author(s): Liu Q, Leisenring WM, Ness KK, Robison LL, Armstrong GT, Yasui Y, Bhatia S.

    Journal: J Clin Oncol

  • Pregnancy after chemotherapy in male and female survivors of childhood cancer treated between 1970 and 1999: a report from the Childhood Cancer Survivor Study cohort. 

    2016

    Citation: 17(5):567-76

    Author(s): Chow EJ, Stratton KL, Leisenring WM, Oeffinger KC, Sklar CA, Donaldson SS, Ginsberg JP, Kenney LB, Levine JM, Robison LL, Shnorhavorian M, Stovall M, Armstrong GT, Green DM.

    Journal: Lancet Oncol

  • Breast Cancer Risk in Childhood Cancer Survivors Without a History of Chest Radiotherapy: A Report from the Childhood Cancer Survivor Study.

    2016

    Citation: 34(9):910-8

    Author(s): Henderson TO, Moskowitz CS, Chou JF, Bradbury AR, Neglia JP, Dang CT, Onel K, Novetsky Friedman D, Bhatia S, Strong LC, Stovall M, Kenney LB, Barnea D, Lorenzi E, Hammond S, Leisenring WM, Robison LL, Armstrong GT, Diller LR, Oeffinger KC.

    Journal: J Clin Oncol

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