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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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  • Major cardiac events for adult survivors of childhood cancer diagnosed between 1970 and 1999: report from the Childhood Cancer Survivor Study cohort.

    2020

    Citation: 368:I6794

    Author(s): Mulrooney DA, Hyun G, Ness KK, Ehrhardt MJ, Yasui Y, Duprez D, Howell RM, Leisenring WM, Constine LS, Tonorezos E, Gibson TM, Robison LL, Oeffinger KC, Hudson MM, Armstrong GT.

    Journal: BMJ

  • Genetic variation in POT1 and risk of thyroid subsequent malignant neoplasm: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 15(2):e0228887

    Author(s): Richard MA, Lupo PJ, Morton LM, Yasui Y, Sapkota Y, Arnold MA, Aubert G, Neglia JP, Turcotte LM, Leisenring WM, Sampson JN, Chanock SJ, Hudson MM, Armstrong GT, Robison LL, Bhatia S, Gramatges MM.

    Journal: PLOS ONE

  • Life expectancy of adult survivors of childhood over 3 decades.

    2020

    Citation: 6(3):350-357

    Author(s): Yeh JM, Ward ZJ, Chaudhry A, Liu Q, Yasui Y, Armstrong GT, Gibson TM, Howell R, Hudson MM, Krull KR, Leisenring WM, Oeffinger KC, Diller L.

    Journal: JAMA Oncol

  • Comparison of radiation dose reconstruction methods to investigate late adverse effects of radiotherapy for childhood cancer: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 193(2):95-106

    Author(s): Schonfeld SJ, Howell RM, Smith SA, Neglia JP, Turcotte LM, Arnold MA, Inskip PD, Oeffinger KC, Moskowitz CS, Henderson TO, Leisenring WM, Gibson TM, Berrington de González A, Sampson JN, Chanock SJ, Tucker MA, Bhatia S, Robison LL, Armstrong GT, Morton LM.

    Journal: Radiat Res

  • Skin cancer early detection practices among adult survivors of childhood cancer treated with radiation.

    2019

    Citation: 139(9):1898-1905

    Author(s): Geller AC, Keske RR, Haneuse S, Davine JA, Emmons KM, Daniel CL, Gibson TM, Marghoob A, Mertens AC, McDonald MJ, Robison LL, Howell RM, Whitton JA, Coroiu A, Leisenring WM, Armstrong GT.

    Journal: J Invest Dermatol

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