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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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  • Education, employment, insurance and marital status among 694 survivors of pediatric lower extremity bone tumors: A Report from the Childhood Cancer Survivor Study.

    2003

    Citation: 97(10):2554-64

    Author(s): Nagarajan R, Neglia JP, Clohisy DR, Yasui Y, Greenberg M, Hudson M, Zevon MA, Tersak JM, Ablin A, Robison LL.

    Journal: Cancer

  • Endocrine and cardiovascular late effects among adult survivors of childhood brain tumors: Childhood Cancer Survivor Study.

    2003

    Citation: 97(3):663-73

    Author(s): Gurney JG, Kadan-Lottick NS, Packer RJ, Neglia JP, Sklar CA, Punyko JA, Stovall M, Yasui Y, Nicholson HS, Wolden S, McNeil DE, Mertens AC, Robison LL.

    Journal: Cancer

  • 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

  • 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

  • Health status of adult long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2003

    Citation: 290(12):1583-92

    Author(s): Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LL, Oeffinger KC.

    Journal: JAMA

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