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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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  • Temporal Trends in Treatment and Subsequent Neoplasm Risk among 5-Year Survivors of Childhood Cancer, 1970-2015.

    2017

    Citation: 317(8):814-824

    Author(s): Turcotte LM, Liu Q, Yasui Y, Arnold MA, Hammond S, Howell RM, Smith SA, Weathers RE, Henderson TO, Gibson TM, Leisenring W, Armstrong GT, Robison LL, Neglia JP.

    Journal: JAMA

  • Predictors of Fatigue and Poor Sleep in Adult Survivors of Childhood Hodgkin’s Lymphoma: A Report from the Childhood Cancer Survivor Study.

    2017

    Citation: 11(2):256-263

    Author(s): Rach AM, Crabtree VM, Brinkman TM, Zeltzer L, Marchak JG, Srivastava D, Tynes B, Lai JS, Robison LL, Armstrong GT, Krull KR.

    Journal: J Cancer Surviv

  • Meta-analysis of genome-wide association studies reveals genetic overlap between Hodgkin lymphoma and multiple sclerosis.

    2016

    Citation: 45(3):728-40

    Author(s): Khankhanian P, Cozen W, Himmelstein DS, Madireddy L, Din L, van den Berg A, Matsushita T, Glaser SL, Moré JM, Smedby KE, Baranzini SE, Mack TM, Lizée A, de Sanjosé S, Gourraud PA, Nieters A, Hauser SL, Cocco P, Maynadié M, Foretová L, Staines A, Delahaye-Sourdeix M, Li D, Bhatia S, Melbye M, Onel K, Jerrett R, McKay JD, Okesenberg JR, Hjalgrim H.

    Journal: Int J Epidemiol

  • The Risk of Cataract among Survivors of Childhood and Adolescent Cancer: A Report from the Childhood Cancer Survivor Study.

    2016

    Citation: 185(4):366-74

    Author(s): Chodick G, Sigurdson AJ, Kleinerman RA, Sklar CA, Leisenring W, Mertens AC, Stovall M, Smith SA, Weathers RE, Veiga LH, Robison LL, Inskip PD.

    Journal: Rad Res

  • Comorbid Symptoms of Emotional Distress in Adult Survivors of Childhood Cancer.

    2016

    Citation: 122(20):3215-3224

    Author(s): D’Agostino NM, Edelstein K, Zhang N, Recklitis CJ, Brinkman TM, Srivastava D, Leisenring WM, Robison LL, Armstrong GT, Krull KR.

    Journal: Cancer

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