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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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  • Survivors of childhood cancer have increased risk of gastrointestinal complications later in life.

    2011

    Citation: 140(5):1464-71

    Author(s): Goldsby R, Chen Y, Raber S, Li L, Diefenbach K, Shnorhavorian M, Kadan-Lottick N, Kastrinos F, Yasui Y, Stovall M, Oeffinger K, Sklar C, Armstrong GT, Robison LL, Diller L.

    Journal: Gastroenterology

  • Occurrence of multiple subsequent neoplasms in long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 29(22): 3056-64

    Author(s): Armstrong GT, Liu W, Leisenring W, Yasui Y, Hammond S, Bhatia S, Neglia JP, Stovall M, Srivastava D, Robison LL.

    Journal: J Clin Oncol

  • Physical, mental and neurocognitive status and employment outcomes in the Childhood Cancer Survivor Study cohort.

    2011

    Citation: 20(9):1838-49

    Author(s): Kirchhoff AC, Krull KR, Ness KK, Armstrong GT, Park ER, Stovall M, Robison LL, Leisenring W.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Neurocognitive functioning and health-related behaviours in adult survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 47(9):1380-8

    Author(s): Krull KR, Annett RD, Pan Z, Ness KK, Nathan PC, Srivastava DK, Stovall M, Robison LL, Hudson MM.

    Journal: Eur J Cancer

  • Twenty-Five Year Follow-Up of Childhood Wilms Tumor: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 57(7):1210-6

    Author(s): Termuhlen AM, Tersak JM, Liu Q, Yasui Y, Stovall M, Weathers R, Deutsch M, Sklar CA, Oeffinger KC, Armstrong G, Robison LL, Green DM.

    Journal: Pediatr Blood Cancer

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