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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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  • Specific causes of excess late mortality and association with modifiable risk factors among survivors of childhood cancer: a report from the Childhood Cancer Survivor Study cohort

    2023

    Citation: 401(10386):1447-1457

    Author(s): Dixon SB, Liu Q, Chow EJ, Oeffinger KC, Nathan PC, Howell RM, Leisenring WM, Ehrhardt MJ, Ness KK, Krull KR, Mertens AC, Hudson MM, Robison LL, Yasui Y, Armstrong GT

    Journal: Lancet

  • Patient-reported neurocognitive function in adult survivors of childhood and adolescent osteosarcoma and Ewing sarcoma.

    2023

    Citation: 17(4):1238-1250

    Author(s): Kadan-Lottick NS, Zheng DJ, Wang M, Bishop MW, Srivastava DK, Ross WL, Rodwin RL, Ness KK, Gibson TM, Spunt SL, Okcu MF, Leisenring WM, Robison LL, Armstrong GT, Krull KR.

    Journal: J Cancer Surviv

  • Financial hardship in adult survivors of childhood cancer in the era after implementation of the Affordable Care Act: a report from the Childhood Cancer Survivor Study

    2023

    Citation: 41(5):1000-1010

    Author(s): Nathan PC, Huang I, Chen Y, Henderson TO, Park ER, Kirchhoff AC, Robison LL, Krull K, Leisenring W, Armstrong GT, Conti RM, Yasui Y, Yabroff KR

    Journal: J Clin Oncol

  • Cardiovascular risk factors disparities in adult survivors of childhood cancer compared with the general population

    2023

    Citation: 5(4):489-500

    Author(s): Noyd DH, Liu Q, Yasui Y, Chow EJ, Bhatia S, Nathan PC, Landstrom AP, Tonorezos E, Casillas J, Berkman A, Ness KK, Mulrooney DA, Leisenring WM, Howell CR, Shoag J, Kirchhoff A, Howell RM, Gibson TM, Zullig LL, Armstrong GT, Oeffinger KC

    Journal: JACC CardioOncol

  • Long-term morbidity and mortality among survivors of neuroblastoma diagnosed during infancy: A report from the Childhood Cancer Survivor Study (CCSS)

    2023

    Citation: 41(8):1565-1576

    Author(s): Friedman DN, Goodman PS, Leisenring WM, Diller LR, Cohn SL, Howell RM, Smith SA, Tonorezos ES, Wolden SL, Neglia JP, Ness KK, Gibson TM, Nathan PC, Weil BR, Robison LL, Oeffinger KC, Armstrong GT, Sklar CA, Henderson TO

    Journal: J Clin Oncol

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