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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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  • Utilization of special education services and educational attainment among long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2003

    Citation: 97(4):1115-26

    Author(s): Mitby PA, Robison LL, Whitton JA, Zevon MA, Gibbs IC, Tersak JM, Meadows AT, Stovall M, Zeltzer LK, Mertens AC.

    Journal: Cancer

  • Risk of disease recurrence and second neoplasms in survivors of childhood cancer treated with growth hormone: A Report from the Childhood Cancer Survivor Study.

    2002

    Citation: 87(7):3136-41

    Author(s): Sklar CA, Mertens AC, Mitby P, Occhiogrosso G, Qin J, Heller G, Yasui Y, Robison LL.

    Journal: J Clin Endocrinol Metab

  • Study design and cohort characteristics of the Childhood Cancer Survivor Study: A multi-institutional collaborative project.

    2002

    Citation: 38(4):229-39

    Author(s): Robison LL, Mertens AC, Boice JD, Breslow NE, Donaldson SS, Green DM, Li FP, Meadows AT, Mulvihill JJ, Neglia JP, Nesbit ME, Packer RJ, Potter JD, Sklar CA, Smith MA, Stovall M, Strong LC, Yasui Y, Zeltzer LK.

    Journal: Med Pediatr Oncol

  • Childhood cancer survivors' knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study.

    2002

    Citation: 287(14):1832-9

    Author(s): Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, Hudson M, Greenberg M, Mertens AC.

    Journal: JAMA

  • Pulmonary complications in survivors of childhood and adolescent cancer: A Report from the Childhood Cancer Survivor Study.

    2002

    Citation: 95(11):2431-41

    Author(s): Mertens AC, Yasui Y, Liu Y, Stovall M, Hutchinson R, Ginsberg J, Sklar C, Robison LL.

    Journal: Cancer

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