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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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  • Somatic and germline TP53 alterations in second malignant neoplasms from pediatric cancer survivors.

    2017

    Citation: 23(7):1852-1861

    Author(s): Sherborne AL, Lavergne V, Yu K, Lee L, Davidson PR, Mazor T, Smirnoff I, Horvai A, Loh M, DuBois SG, Goldsby RE, Neglia J, Hammond S, Robison LL, Wustrack R, Costello J, Nakamura AO, Shannon K, Bhatia S, Nakamura JL.

    Journal: Clin Cancer Res

  • Emotional distress impacts quality of life evaluation: a report from the Childhood Cancer Survivor Study. 

    2017

    Citation: 11(3):309-319

    Author(s): Huang IC, Brinkman TM, Armstrong GT, Leisenring W, Robison LL, Krull KR

    Journal: J Cancer Surviv

  • 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

  • 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

  • Effects of Temporal Changes in Therapeutic Exposure on Self-reported Health Status in Childhood Cancer Survivors.

    2017

    Citation: 166(20):89-98

    Author(s): Ness KK, Hudson MM, Jones KE, Leisenring W, Yasui Y, Chen Y,Stovall M, Gibson TM, Green DM, Neglia JP, Henderson TO, Casillas J, Ford JS, Effinger KE, Krull KR, Armstrong GT, Robison LL, Oeffinger KC, Nathan PC.

    Journal: Ann Intern Med

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