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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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  • Risk factors for neurocognitive impairment, emotional distress and poor quality of life in survivors of pediatric rhabdomyosarcoma: a report from the Childhood Cancer Survivor Study

    2024

    Citation: Epub Feb 19, 2024

    Author(s): Van der Plas E, Darji H, Srivastava DK, Schapiro M, Jeffe D, Perkins S, Howell R, Leisenring W, Armstrong GT, Oeffinger KC, Krull K, Edelstein K, Hayashi RJ

    Journal: Cancer

  • Mortality after major cardiovascular events in survivors of childhood cancer

    2024

    Citation: 83(8):827-838

    Author(s): Bottinor W, Im C, Doody DR, Armenian SH, Arynchyn A, Hong B, Howell RM, Jacobs DR, Ness KK, Oeffinger KC, Reiner AP, Armstrong GT, Yasui Y, Chow EJ

    Journal: J Am Coll Cardiol

  • The ENGAGE study: a 3-arm randomized hybrid type 1 effectiveness and implementation study of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic services in childhood cancer survivors

    2024

    Citation: 24(1):253

    Author(s): Henderson TO, Allen MA, Mim R, Egleston B, Fleisher L, Elkin E, Oeffinger K, Krull K, Ofidis D, Mcleod B, Griffin H, Wood E, Cacioppo C, Weinberg M, Brown S, Howe S, McDonald A, Vukadinovich C, Alston S, Rinehart D, Armstrong GT, Bradbury AR.

    Journal: BMC Health Serv Res

  • 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

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

    2024

    Citation: Epub Mar 9, 2024

    Author(s): Friedman DN, Goodman PS, 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

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