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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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  • 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

  • Prevalence of carotid ultrasound screening in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2025

    Citation: 131(1):e35591

    Author(s): Bryce Y, Whitton JA, Straton K, Leisenring WM, Chow EJ, Armstrong GT, Weil B, Dieffenbach B, Howell RM, Oeffinger KC, Nathan PC, Tonorezos ES

    Journal: Cancer

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

    2025

    Citation: Epub Jan 8, 2025

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

    Journal: J Clin Oncol

  • Temporal trends of subsequent CNS malignancies among survivors of childhood cancer

    2025

    Citation: Epub Jan 10, 2025

    Author(s): Galvin RT, Chen Y, Yuan Y, Cooney T, Howell R, Smith S, Arnold MA, Conces M, Leisenring W, Armstrong GT, Neglia JP, Turcotte LM

    Journal: J Natl Cancer Inst

  • Fear of cancer recurrence in adult survivors of childhood cancer

    2024

    Citation: 7(10):e2436144

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

    Journal: JAMA Netw Open

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