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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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  • Variants at 6q21 implicated PRDM1 in the etiology of therapy-induced second malignancies after Hodgkin's lymphoma.

    2011

    Citation: 17(8):941-3

    Author(s): Best T, Li D, Skol AD, Kirchhoff T, Jackson SA, Yasui Y, Bhatia S, Strong LC, Domcheck SM, Nathanson KL, Olopade OI, Huang RS, Mack TM, Conti DV, Offit K, Cozen W, Robison LL, Onel K.

    Journal: Nat Med

  • Psychological outcomes of siblings of cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 20(12):1259-68

    Author(s): Buchbinder D, Casillas J, Krull KR, Goodman P, Leisenring W, Recklitis C, Alderfer MA, Robison LL, Armstrong GT, Kunin-Batson A, Stuber M, Zeltzer LK.

    Journal: Psychooncology

  • Long-term Risk for Subsequent Leukemia after Treatment for Childhood Cancer: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(23):6315-8

    Author(s): Nottage K, Lanctot J, Li Z, Neglia JP, Bhatia S, Hammond S, Leisenring W, Meadows A, Srivastava D, Robison LL, Armstrong GT.

    Journal: Blood

  • Twenty years of follow-up of survivors of childhood osteosarcoma: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(3):625-34

    Author(s): Nagarajan R, Kamruzzaman A, Ness KK, Marchese VG, Sklar C, Mertens A, Yasui Y, Robison LL, Marina N.

    Journal: Cancer

  • Auditory Complications in Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 57(1):126-34

    Author(s): Whelan K, Stratton K, Kawashima T, Leisenring W, Hayashi S, Waterbor J, Blatt J, Sklar CA, Packer R, Mitby P, Robison LL, Mertens AC.

    Journal: Pediatr Blood Cancer

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