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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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  • Cohort Profile: Risk and risk factors for female breast cancer after treatment for childhood and adolescent cancer: an internationally pooled cohort

    2022

    Citation: 12(11):e065910

    Author(s): Wang Y, Kremer LCM, van Leeuwen FE, Armstrong GT, Leisenring W, de Vathaire F, Hudson MM, Kuehni CE, Arnold MA, Haddy N, Demoor-Goldschmidt C, Diallo I, Howell RM, Ehrhardt MJ, Moskowitz CS, Neglia JP, van der Pal HJH, Robison LL, Schaapveld M, Turcotte LM, Waespe N, Ronckers CM, Teepen JC

    Journal: BMJ Open

  • Development and validation of models to predict poor health-related quality of life among adult survivors of childhood cancer

    2022

    Citation: 5(8):2227225

    Author(s): Schulte F, Chen Y, Yasui Y, Ruiz ME, Leisenring WM, Gibson TM, Nathan PC, Oeffinger KC, Hudson MM, Armstrong GT, Robison LL, Krull KR, Huang I

    Journal: JAMA Netw Open

  • Genetic risk score enhances the risk prediction of severe obesity in adult survivors of childhood cancer

    2022

    Citation: 28(8):1590-1598

    Author(s): Sapkota Y, Qiu W, Dixon SB, Wilson CL, Wang Z, Zhang J, Leisenring W, Chow EJ, Bhatia S, Armstrong GT, Robison LL, Hudson MM, Delaney A, Yasui Y

    Journal: Nat Med

  • Genome-wide association study of posttraumatic stress disorder among childhood cancer survivors: results from the Childhood Cancer Survivor Study and the St. Jude Lifetime Cohort

    2022

    Citation: 12(1):342

    Author(s): Lu D, Sapkota Y, Valdimarsdóttir UA, Koenen KC, Li N, Leisenring WM, Gibson TM, Wilson CL, Robison LL, Hudson MM, Armstrong GT, Krull K, Yasui Y, Bhatia S, Recklitis CJ

    Journal: Transl Psychiatry

  • Genome-wide association study of pregnancy in childhood cancer survivors: a report from the Childhood Cancer Survivor Study.

    2022

    Citation: 31(9):1858-1862

    Author(s): Rotz SJ, Worley S, Hu B, Bazeley P, Baedke JL, Hudson MM, Kuo DJ, Oeffinger KC, Robison LL, Sahoo D, Wang F, Yasui Y, Armstrong GT, Bhatia S

    Journal: Cancer Epidemiol Biomarkers Prev

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