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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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  • Increasing Cardiomyopathy Screening in Childhood Cancer Survivors: A Cost Analysis of Advanced Practice Nurse Phone Counseling. 

    2016

    Citation: 43(6):E242-50

    Author(s): Cox CL, Andersen MR, Santucci A, Robison LL, Hudson MM.

    Journal: Oncol Nurs Forum

  • Cognitive, behaviour and academic functioning in adolescent and young adult survivors of childhood acute lymphoblastic leukaemia: A report from the Childhood Cancer Survivor Study.

    2016

    Citation: 3(10):965-972

    Author(s): Jacola LM, Edelstein K, Liu W, Pui CH, Hayashi R, Kaden-Lottick NS, Srivastava D, Henderson T, Leisenring W, Robison LL, Armstrong GT, Krull KR.

    Journal: Lancet Psychiatry

  • Patterns and predictors of clustered risky health behaviors among adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

    2016

    Citation: 122(17):2747-56

    Author(s): Lown EA, Hijiya N, Zhang N, Srivastava DK, Leisenring WM, Nathan PC, Castellino SM, Devine KA, Dilley K, Krull KR, Oeffinger KC, Hudson MM, Armstrong GT, Robison LL, Ness KK.

    Journal: Cancer

  • 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

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