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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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  • Final height and body mass index among adult survivors of childhood brain cancer: Childhood Cancer Survivor Study.

    2003

    Citation: 88(10):4731-9

    Author(s): Gurney JG, Ness KK, Stovall M, Wolden S, Punyko JA, Neglia JP, Mertens AC, Packer RJ, Robison LL, Sklar CA.

    Journal: J Clin Endocrinol Metab

  • Self-reported family history of cancer: The utility of probing questions.

    2003

    Citation: 14(6):737-40

    Author(s): Kadan-Lottick NS, Friedman DL, Mertens AC, Whitton JA, Yasui Y, Strong LC, Robison LL.

    Journal: Epidemiology

  • Long-term neurologic and neurosensory sequelae in adult survivors of a childhood brain tumor: Childhood Cancer Survivor Study.

    2003

    Citation: 21(17):3255-61

    Author(s): Packer RJ, Gurney JG, Punyko JA, Donaldson SS, Inskip PD, Stovall M, Yasui Y, Mertens AC, Sklar CA, Nicholson HS, Zeltzer LK, Neglia JP, Robison LL.

    Journal: J Clin Oncol

  • Smoking among participants in the childhood cancer survivors cohort: The Partnership for Health Study.

    2003

    Citation: 21(2):189-96

    Author(s): Emmons KM, Butterfield RM, Puleo E, Park ER, Mertens A, Gritz ER, Lahti M, Li FP.

    Journal: J Clin Oncol

  • Genetic effects of radiotherapy for childhood cancer.

    2003

    Citation: 85(1):65-80

    Author(s): Boice JD Jr, Tawn EJ, Winther JF, Donaldson SS, Green DM, Mertens AC, Mulvihill JJ, Olsen JH, Robison LL, Stovall M.

    Journal: Health Phys

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