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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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  • Longitudinal Follow-Up of Adult Survivors of Ewing Sarcoma: A Report from the Childhood Cancer Survivor Study (CCSS).

    2017

    Citation: 123(13):2551-2560

    Author(s): Marina NM, Lui Q, Donaldson SS, Sklar CA, Armstrong GT, Oeffinger KC, Leisenring WM, Ginsberg JP, Henderson TO, Neglia JP, Stovall MA, Yasui Y, Randall RL, Geller DS, Robison LL, Ness KK.

    Journal: Cancer

  • Long-term Neurologic Health and Psychosocial Function of Adults Survivors of Childhood Medulloblastoma/PNET: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 19(5):689-698

    Author(s): King AA, Seidel K, Di C, Leisenring WM, Perkins SM, Krull KR, Sklar CA, Green DM, Armstrong GT. Zeltzer LK, Wells E, Stovall M, Ullrich N, Oeffinger KC, Robison LL, Packer RJ.

    Journal: Neuro Oncol

  • Morbidity and Mortality Associated with Meningioma After Cranial Radiotherapy: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 35(14):1570-1576

    Author(s): Bowers DC, Moskowtiz CS, Chou JF, Mazewski CM, Neglia J, Armstrong GT, Leisenring W, Robison LL, Oeffinger KC.

    Journal: J Clin Oncol

  • Predictors of Fatigue and Poor Sleep in Adult Survivors of Childhood Hodgkin’s Lymphoma: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 11(2):256-263

    Author(s): Rach AM, Crabtree VM, Brinkman TM, Zeltzer L, Marchak JG, Srivastava D, Tynes B, Lai JS, Robison LL, Armstrong GT, Krull KR.

    Journal: J Cancer Surviv

  • Radiation-associated breast cancer and gonadal hormone exposure: a report from the Childhood Cancer Survivor Study.

    2017

    Citation: 117(2):290-299

    Author(s): Moskowitz CS, Chou JF, Sklar CA, Barnea D, Ronckers CM, Friedman DN, Neglia JP, Turcotte L, Howell RM, Henderson TO, Armstrong GT, Leisenring WM, Robison LL, van Leeuwen FE, Pike MC, Oeffinger KC.

    Journal: Br J Cancer

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