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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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  • Racial and ethnic disparities in neurocognitive, emotional and quality of life outcomes in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 125(20):3666-3677

    Author(s): Dixon SB, Li N, Yasui Y, Bhatia S, Casillas JN, Gibson TM, Ness KK, Porter J, Howell RM, Leisenring WM, Robison LL, Hudson MM, Krull KR, Armstrong GT.

    Journal: Cancer

  • Sleep, emotional distress, and physical health in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 28(4):903-912

    Author(s): Daniel LC, Wang M, Mulrooney DA, Srivastava D, Schwartz LA, Edelstein K, Brinkman TM, Zhou ES, Howell RM, Gibson TM, Leisenring W, Oeffinger KC, Neglia J, Robison LL, Armstrong GT, Krull KR.

    Journal: Psychooncology

  • Long-term health and social function in adult survivors of pediatric astrocytoma: a report from the Childhood Cancer Survivor Study.

    2019

    Citation: 106;171-180

    Author(s): Effinger KE, Stratton KL, Fisher PG, Ness KK, Krull KR, Oeffinger KC, Armstrong GT, Robison LL, Hudson MM, Leisenring WM, Nathan PC.

    Journal: Eur J Cancer

  • Genetic susceptibility to radiation-induced breast cancer after Hodgkin Lymphoma.

    2019

    Citation: 133(10):1130-1139

    Author(s): Opstal-van Winden AWJ, de Haan HG, Hauptmann M, Schmidt MK, Broeks A, Russell NS, Janus CPM, Krol ADG, van der Bann FH, De Bruin ML, van Eggermond AM, Dennis J, Anton Culver H, Haiman CA, Sawyer EJ, Cox A, Devilee P, Hooning MJ, Peto J, Couch FJ, Pharoah P, Orr N, Easton DF, Aleman BMP, Strong LC, Bhatia S, Cooke R, Robison LL, Swerdlow AJ, van Leeuwen FE.

    Journal: Blood

  • Subsequent neoplasms after a primary tumor in individuals with Neurofibromatosis type 1.

    2019

    Citation: 37(32):3050-3058

    Author(s): Bhatia S, Chen Y, Wong FL, Hageman L, Smith K, Korf B, Cannon A, Leidy DJ, Paz A, Andress JE, Friedman GK, Metrock K, Neglia JP, Arnold M, Turcotte LM, de Blank P, Leisenring W, Armstrong GT, Robison LL, Clapp DW, Shannon K, Nakamura JL, Fisher MJ.

    Journal: J Clin Oncol

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