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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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  • Hospitalization rates among survivors of childhood cancer in the Childhood Cancer Survivor Study cohort.

    2012

    Citation: 59(1):126-32

    Author(s): Kurt BA, Nolan VG, Ness KK, Neglia JP, Tersak JM, Hudson MM, Armstrong GT, Hutchinson RJ, Leisenring WM, Oeffinger KC, Robison LL, Arora M.

    Journal: Pediatr Blood Cancer

  • Survivor Profiles Predict Health Behavior Intent: The Childhood Cancer Survivor Study.

    2012

    Citation: 21(5):469-78

    Author(s): Cox CL, Zhu L, Finnegan L, Steen BD, Hudson MM, Robison LL, Oeffinger KC.

    Journal: Psychooncology

  • Scarring, disfigurement, and quality of life in long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 30(20): 2466-74

    Author(s): Kinahan KE, Sharp LK, Seidel K, Leisenring W, Didwania A, Lacouture ME, Stovall M, Haryani A, Robison LL, Krull KR.

    Journal: J Clin Oncol

  • 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

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