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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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  • Targeted long-read sequencing of the Ewing sarcoma 6p25.1 susceptibility locus identifies germline-somatic interactions with EWSR1-FLI1 binding

    2023

    Citation: 110(3):427-441

    Author(s): Lee OW, Rodrigues C, Lin S, Luo W, Jones K, Brown DW, Zhou W, Karlins E, Khan SM, Baulande S, Raynal V, Surdez D, Reynaud S, Rubio RA, Zaidi S, Grossetête S, Ballet S, Lapouble E, Laurence V, Pierron G, Gaspar N, Corradini N, Marec-Bérard P, Rothman N, Dagnall CL, Burdett L, Manning M, Wyatt K, Yeager M, Chari R, Leisenring WM, Kulozik AE, Kriebel J, Meitinger T, Strauch K, Kirchner T, Dirksen U, Mirabello L, Tucker MA, Tirode F, Armstrong GT, Bhatia S, Robison LL, Yasui Y, Romero-Pérez L, Hartmann W, Metzler M, Diver WR, Lori A, Freedman ND, Hoover RN, Morton LM, Chanock SJ, Grünewald TGP, Delattre O, Machiela MJ

    Journal: Am J Hum Genet

  • Financial hardship in childhood cancer survivors treated with hematopoietic cell transplantation: a report from the Childhood Cancer Survivor Study

    2023

    Citation: 29(11):705.e1-705.e9

    Author(s): Buchbinder D, Bhatt NS, Wang H, Yasui Y, Armenian S, Bhatia S. Chow EJ, Huang I, Kirchoff AC, Leisenring W, Park ER, Yabroff KR, Armstrong GT, Nathan PC, Khera N

    Journal: Transplant Cell Ther

  • Emotional, behavioral, and physical health consequences of loneliness in young adult survivors of childhood cancer: results from the Childhood Cancer Survivor Study

    2023

    Citation: 129(7):1117-1128

    Author(s): Papini C, Fayad AA, Wang M, Schulte FS, Huang I, Chang Y, Howell RM, Srivastava D, Leisenring WM, Armstrong GT, Gibson TM, Robison LL, Oeffinger KC, Krull KR, Brinkman TM

    Journal: Cancer

  • Experiences of adult survivors of childhood cancer in a randomized cardiovascular health promotion trial: a qualitative report from the Childhood Cancer Survivor Study

    2023

    Citation: 18(5):1665-1673

    Author(s): Cai CR, Cornelius S, Demedis J, Hagen AM, Abbey-Lambertz M, Armstrong GT, Oeffinger KC, Syrjala KL, Taylor SL, Yi JC, Chow EJ

    Journal: J Cancer Surviv

  • Cardiac substructure radiation dose and risk of late cardiac disease in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2023

    Citation: 41(22):3826-3838

    Author(s): Bates JE, Shrestha S, Liu Q, Smith SA, Mulrooney DA, Leisenring W, Gibson T, Robison LL, Chow EJ, Oeffinger KC, Armstrong GT, Constine LS, Hoppe BS, Lee C, Yasui Y, Howell RM

    Journal: J Clin Oncol

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