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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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  • Impact of the COVID-19 pandemic on a large cohort of adult survivors of childhood cancer.

    2021

    Citation: 68(11):e29324

    Author(s): Krull KR, McDonald A, Goodman P, Vukadinovich C, Ford J, Leisenring WM, Chow E, Robison LL, Armstrong GT.

    Journal: Pediatr Blood Cancer

  • Late-onset kidney failure in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2021

    Citation: 155:216-226

    Author(s): Dieffenbach BV, Liu Q, Murphy A, Stein D, Wu N, Madenci A, Leisenring W, Kadan-Lottick N, Christison-Lagay E, Goldsby R, Howell R, Smith S, Oeffinger K, Yasui Y, Armstrong G, Weldon C, Chow E, Weil B

    Journal: Eur J Cancer

  • Longitudinal evaluation of neuromuscular dysfunction in long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

    2021

    Citation: 30(8):1536-1545

    Author(s): Rodwin RL, Chen Y, Yasui Y, Leisenring WM, Gibson TM, Nathan PC, Howell RM, Krull KR, Mohrmann C, Hayashi RJ, Chow EJ, Oeffinger KC, Armstrong GT, Ness KK, Kadan-Lottick NS.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Long-term neurocognitive and psychosocial outcomes after Acute Myeloid Leukemia: a Childhood Cancer Survivor Study report.

    2021

    Citation: 113(4):481-495

    Author(s): Stefanski K, Anixt JS, Goodman P, Bowers K, Leisenring W, Baker KS, Burns K, Howell R, Davies S, Robison LL, Armstrong GT, Krull KK, Recklitis C.

    Journal: J Natl Cancer Inst

  • Lung cancer as a subsequent malignant neoplasm in survivors of childhood cancer.

    2021

    Citation: 30(12):2235-2243

    Author(s): Ghosh T, Chen Y, Dietz AC, Armstrong GT, Howell RM, Smith SA, Mulrooney DA, Turcotte LM, Yuan Y, Yasui Y, Neglia J.

    Journal: Cancer Epidemiol Biomarkers Prev

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