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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

  • Prediction of breast cancer risk for adolescents and young adults with Hodgkin lymphoma

    2025

    Citation: 117(4):619-628

    Author(s): Roberti S, van Leeuwen FE, Diallo I, de Vathaire F, Schaapveld M, Leisenring WM, Howell RM, Armstrong GT, Moskowitz CS, Smith SA, Aleman BMP, Krul IM, Russell NS, Pfeiffer RM, Hauptmann M

    Journal: J Natl Cancer Inst

  • 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

  • Psychosocial health and chronic health conditions among bereaved siblings: a report from the Childhood Cancer Survivor Study (CCSS)

    2025

    Citation: 72(12):e32076

    Author(s): Sharma P, George N, Srivastava D, Chow EJ, Alderfer MA, Leisenring W, Long KA, Lown AE, Oeffinger KC, Zeltzer LK, Armstrong GT, Krull KR, Brinkman TM, Buchbinder D

    Journal: Pediatr Blood Cancer

  • Subsequent meningiomas among survivors of childhood cancer

    2025

    Citation: 8(12):e2548715

    Author(s): Bowers DC, Cooney T, Chen Y, Yuan Y, Galvin R, Im C, Leisenring W, Brady SW, Smith SA, Howell RM, Arnold MA, Conces M, Yasui Y, Diller LR, Armstrong GT, Neglia JP, Turcotte LM

    Journal: JAMA Netw Open

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