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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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  • Successful use of whole genome amplified DNA from multiple source types for high-density Illumina SNP microarrays.

    2018

    Citation: 19(1):182

    Author(s): Dagnall CL, Morton LM, Hicks BD, Li S, Zhou W, Karlins E, Teshome K, Chowdhury S, Lashley KS, Sampson JN, Robison LL, Armstrong GT, Bhatia S, Radloff GA, Davies SM, Tucker MA, Yeager M, Chanock SJ.

    Journal: BMC Genomics

  • Telomere length-associated genetic variants and the risk of thyroid cancer in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS).

    2018

    Citation: 28(2):417-419

    Author(s): Gramatges MM, Morton LM, Yasui Y, Arnold MA, Neglia JP, Leisenring WM, Machiela MJ, Dagnall CL, Chanock SJ, Armstrong GT, Robison LL, Bhatia S, Lupo PJ.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Temporal patterns in the risk of chronic health conditions in survivors of childhood cancer diagnosed 1970-99: a report from the Childhood Cancer Survivor Study cohort.

    2018

    Citation: 19(12):1590-1601

    Author(s): Gibson TM, Mostoufi-Moab S, Stratton KL, Leisenring WM, Barnea D, Chow EJ, Donaldson SS, Howell RM, Hudson MM, Mahajan A, Nathan PC, Ness KK, Sklar CA, Tonorezos ES, Weldon CB, Wells EM, Yasui Y, Armstrong GT, Robison LL, Oeffinger KC.

    Journal: Lancet Oncol

  • Assessing health insurance coverage characteristics and impact on health care costs, worry and access: a report from the Childhood Cancer Survivor Study.

    2017

    Citation: 117(12);1855-1858

    Author(s): Park ER, Kirchhoff AC, Nipp RD, Donelan K, Leisenring WM, Armstrong GT, Kuhlthau KA.

    Journal: JAMA Intern Med

  • Effects of Population Socioeconomic and Health System Factors on Medical Care for Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 6(1):74-82

    Author(s): Caplin DA, Smith KR, Ness KK, Nathan PC, Hanson HA, Hudson MM, Leisenring WM, Robison LL, Oeffinger KO.

    Journal: J Adolesc Young Adult Oncol

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