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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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  • Intolerance of uncertainty, psychological symptoms, and pain in long-term childhood cancer survivors: a report from the Childhood Cancer Survivor Study

    2025

    Citation: Epub Jul 23, 2025

    Author(s): Alberts NM, Stratton KL, Leisenring WM, Pizzo A, Lamoureux E, Alschuler K, Flynn J, Krull KR, Jibb LA, Nathan PC, Olgin JE, Stinson JN, Armstrong GT

    Journal: J Cancer Surviv

  • Investigation of DNA damage response genes validates the role of DNA repair in pediatric cancer risk and identifies SMARCAL1 as novel osteosarcoma predisposition gene

    2025

    Citation: 43(36):3833-3843

    Author(s): Oak N, Chen W, Blake A, Harrison L, O’Brien M, Previti C, Balasubramanian G, Maass K, Hirsch S, Penkert J, Jones BC, Schramm K, Nathrath M, Pajtler KW, Jones DTW, Witt O, Dirksen U, Li J, Sapkota Y, Ness KK, Guenther LM, Pfister SM, Kratz C, Wang Z, Armstrong GT, Hudson MM, Wu G, Autry RJ, Nichols KE, Sharma R

    Journal: J Clin Oncol

  • Late morbidity and mortality in survivors of childhood ependymoma: A report from the Childhood Cancer Survivor Study (CCSS)

    2025

    Citation: 17(22):3669

    Author(s): Lange KR, de Blank P, Xing M, Mirzaei S, Srivastava DK, Oeffinger KC, Neglia J, Krull K, Nathan PC, Howell R, Ness KK, Turcotte LM, Leisenring WM, Armstrong GT, Brinkman T, Bowers DC, Okcu MF

    Journal: Cancers

  • Melanoma among adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: 43(10):1219-1228

    Author(s): Rotz SJ, Stratton K, Leisenring WM, Smith SA, Howell RM, Bates JE, Pappo AS, Neglia JP, Armstrong GT, Turcotte LM

    Journal: J Clin Oncol

  • Neurocognitive outcomes and functional independence in adult survivors of childhood medulloblastoma diagnosed over 3 decades

    2025

    Citation: 27(1):254-266

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

    Journal: Neuro Oncol

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