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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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  • Cognitive, behaviour and academic functioning in adolescent and young adult survivors of childhood acute lymphoblastic leukaemia: A report from the Childhood Cancer Survivor Study.

    2016

    Citation: 3(10):965-972

    Author(s): Jacola LM, Edelstein K, Liu W, Pui CH, Hayashi R, Kaden-Lottick NS, Srivastava D, Henderson T, Leisenring W, Robison LL, Armstrong GT, Krull KR.

    Journal: Lancet Psychiatry

  • 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

  • Endocrine Abnormalities in Aging Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study.

    2016

    Citation: 34(27):3240-7

    Author(s): Mostoufi-Moab S, Seidel K, Leisenring WM, Armstrong GT, Oeffinger KC, Stovall M, Meacham LR, Green DM, Weathers R, Ginsberg JP, Robison LL, Sklar CA.

    Journal: J Clin Oncol

  • Erectile Dysfunction in Male Survivors of Childhood Cancer - A Report from the Childhood Cancer Survivor Study.

    2016

    Citation: 13(6):945-54

    Author(s): Ritenour CW, Seidel KD, Leisenring W, Mertens AC, Wasilewski-Masker K, Shnorhavorian M, Sklar CA, Whitton JA, Stovall M, Constine LS, Armstrong GT, Robison LL, Meacham LR.

    Journal: J Sex Med

  • Factors Supporting Cardiomyopathy Screening Among At-risk Adult Survivors of Pediatric Malignancies.

    2016

    Citation: 25(4):1307-1316

    Author(s): Cox CL, Zhu L, Ojha RP, Steen BD, Ogg S, Robison LL, Hudson MM

    Journal: Support Care Cancer

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