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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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  • Cumulative burden of late, major surgical intervention in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS) cohort

    2023

    Citation: 24(6):691-700

    Author(s): Dieffenbach BV, Murphy AJ, Liu Q, Ramsey DC, Geiger EJ, Diller LR, Howell RM, Oeffinger KC, Robison LL, Yasui Y, Armstrong GT, Chow EJ, Weil BR, Weldon CB

    Journal: Lancet Oncol

  • Late-onset cognitive impairment and modifiable risk factors in adult childhood cancer survivors

    2023

    Citation: 6(5):e2316077

    Author(s): Phillips NS, Stratton KL, Williams AL, Ahles T, Ness KK, Cohen HJ, Edelstein K, Yasui Y, Oeffinger K, Chow EJ, Howell RM, Robison LL, Armstrong GT, Leisenring WM, Krull KR

    Journal: JAMA Netw Open

  • 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

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