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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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  • Evaluation of polymorphisms in EWSR1 and risk of Ewing sarcoma: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 59(1):52-6

    Author(s): DuBois SG, Goldsby R, Segal M, Woo J, Copren K, Kane JP, Pullinger CR, Matthay KK, Witte J, Lessnick SL, Robison LL, Bhatia S, Strong LC.

    Journal: Pediatr Blood Cancer

  • Radiation-Related Risk of Basal Cell Carcinoma: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 104(16): 1240-50

    Author(s): Watt TC, Inskip PD, Stratton K, Smith SA, Kry SF, Sigurdson AJ, Stovall M, Leisenring W, Robison LL, Mertens AC.

    Journal: J Natl Cancer Inst

  • Cancer Prevention and Screening Practices of Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 21(7): 1078-88

    Author(s): Buchbinder D, Mertens AC, Zeltzer LK, Leisenring W, Goodman P, Lown EA, Alderfer MA, Recklitis C, Oeffinger K, Armstrong GT, Hudson M, Robison LL, Casillas J.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Long-term health-related outcomes in survivors of childhood cancer treated with HSCT versus conventional therapy: A Report from the Bone Marrow Transplant Survivor Study (BMTSS) and the Childhood Cancer Survivor Study (CCSS).

    2011

    Citation: 118(5): 1413-20

    Author(s): Armenian SH, Sun CL, Kawashima T, Arora M, Leisenring W, Sklar CA, Baker KS, Francisco L, Teh JB, Mills G, Wong FL, Rosenthal J, Diller LR, Hudson MM, Oeffinger KC, Forman SJ, Robison LL, Bhatia S.

    Journal: Blood

  • Occupational outcomes of adult childhood cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(13):3033-44

    Author(s): Kirchhoff AC, Krull KR, Ness KK, Park ER, Oeffinger KC, Hudson MM, Stovall M, Robison LL, Wickizer T, Leisenring W.

    Journal: Cancer

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