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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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  • Social outcomes in the Childhood Cancer Survivor Study cohort.

    2009

    Citation: 27(14): 2390-5

    Author(s): Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, Tersak JM, Ness KK.

    Journal: J Clin Oncol

  • The Childhood Cancer Survivor Study: A National Cancer Institute-Supported resource for outcome and intervention research.

    2009

    Citation: 27(14):2308-18

    Author(s): Robison LL, Armstrong GT, Boice JD, Chow EJ, Davies SM, Donaldson SS, Green DM, Hammond S, Meadows AT, Mertens AC, Mulvihill JJ, Nathan PC, Neglia JP, Packer RJ, Rajaraman P, Sklar CA, Stovall M, Strong LC, Yasui Y, Zeltzer LK.

    Journal: J Clin Oncol

  • Treatment-associated subsequent neoplasms among long-term survivors of childhood cancer: The Experience of Childhood Cancer Survivor Study.

    2009

    Citation: 39 Suppl 1:S32-7

    Author(s): Robison LL.

    Journal: Pediatr Radiol

  • Alcohol consumption patterns and risk factors among childhood cancer survivors compared to siblings and general population peers.

    2008

    Citation: 103(7):1139-48

    Author(s): Lown EA, Goldsby R, Mertens AC, Greenfield T, Bond J, Whitton J, Korcha R, Robison LL, Zeltzer LK.

    Journal: Addiction

  • Cause-specific late mortality among 5-year survivors of childhood cancer: The Childhood Cancer Survivor Study.

    2008

    Citation: 100(19):1368-79

    Author(s): Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, Robison LL, Yasui Y.

    Journal: J Natl Cancer Inst

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