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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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  • Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: Implications for Affordable Care Act.

    2012

    Citation: 6(3): 251-9

    Author(s): Park ER, Kirchhoff AC, Zallen JP, Weissman JS, Pajolek H, Mertens AC, Armstrong GT, Robison LL, Donelan K, Recklitis CJ, Diller LR, Kuhlthau KA.

    Journal: J Cancer Surviv

  • Congenital anomalies in the children of cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 30(3):239-45

    Author(s): Signorello LB, Mulvihill JJ, Green DM, Munro HM, Stovall M, Weathers RE, Mertens AC, Whitton JA, Robison LL, Boice JD Jr.

    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

  • Fractures among long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 118(23):5920-8

    Author(s): Wilson CL, Dilley K, Ness KK, Leisenring WL, Sklar CA, Kaste SC, Stovall M, Green DM, Armstrong GT, Robison LL, Kadan-Lottick NS.

    Journal: Cancer

  • 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

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