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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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  • Financial hardship among siblings of long-term survivors of childhood cancer: a Childhood Cancer Survivor Study report

    2024

    Citation: 130(7):1125-1136

    Author(s): Ohlsen TJD, Wang H, Buchbinder D, Huang I, Desai AD, Zheng Z, Kirchhoff AC, Park ER, Krull K, Conti RM, Yasui Y, Leisenring W, Armstrong GT, Yabroff KR, Nathan PC, Chow EJ

    Journal: Cancer

  • Job lock among survivors of childhood cancer and their spouses post Affordable Care Act implementation: A Childhood Cancer Survivor Study brief report

    2024

    Citation: 71(2):e30790

    Author(s): Waters AR, Liu Q, Ji X, Yasui Y, Yabroff KR, Conti RM, Henderson T, Huang I, Leisenring W, Armstrong GT, Nathan PC, Park E, Kirchhoff AC

    Journal: Pediatr Blood Cancer

  • Late cardiac toxic effects associated with treatment protocols for Hodgkin lymphoma in children

    2024

    Citation: 7(1):e2351062

    Author(s): Lo AC, Liu A, Liu Q, Yasui Y, Castellino SM, Kelly KM, Hererra AF, Friedberg JW, Friedman DL, Schwartz CL, Pei Q, Kessel S, Bergeron-Gravel S, Dama H, Roberts K, Constine LS, Hodgson DC

    Journal: JAMA Newt Open

  • Impact of risk-based therapy on late morbidity and mortality in neuroblastoma survivors: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 116(6):885-894

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

    Journal: J Natl Cancer Inst

  • Evolving therapies, neurocognitive outcomes and functional independence in adult survivors of childhood glioma

    2024

    Citation: 116(2):288-298

    Author(s): Papini C, Mirzaei S, Xing M, Olsson I, de Blank P, Lange KR, Salloum R, Srivastava D, Leisenring WM, Howell RM, Oeffinger KC, Robison LL, Armstrong GT, Krull KR, Brinkman TM

    Journal: J Natl Cancer Inst

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