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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

  • Temporal changes in treatment and late mortality and morbidity in adult survivors of childhood Glioma: a report from the Childhood Cancer Survivor Study

    2024

    Citation: Epub Mar 1, 2024

    Author(s): De Blank PMK, Lange KR, Xing M, Mirzaei SS, Srivastava D, Brinkman TM, Ness KK, Oeffinger KC, Neglia J, Krull KR, Yasui Y, Howell R, Turcotte LM, Leisenring W, Armstrong GT, Okcu MF, Bowers D,

    Journal: Nat Cancer

  • 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

  • Polygenic risk scores, radiation treatment exposures and subsequent cancer risk in childhood cancer survivors

    2024

    Citation: 30(3):690-698

    Author(s): Gibson TM, Karyadi DM, Hartley SW, Arnold MA, Berrington de Gonzalez A, Conces MR, Howell RM, Kapoor V, Leisenring WM, Neglia JP, Sampson JN, Turcotte LM, Chanock SJ, Armstrong GT, Morton LM

    Journal: Nat Med

  • Characterization of chronic pain, pain interference, and daily pain experiences in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2024

    Citation: In Press

    Author(s): Alberts NM, Leisenring W, Whitton J, Stratton K, Jibb L, Flynn J, Pizzo A, Brinkman TM, Birnie K, Gibson TM, McDonald A, Ford J, Olgin JE, Nathan PC, Stinson JN, Armstrong GT

    Journal: Pain

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