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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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  • Increasing rates of breast cancer and cardiac surveillance among high-risk survivors of childhood Hodgkin lymphoma following a mailed, one-page survivorship care plan.

    2011

    Citation: 56(5):818-24

    Author(s): Oeffinger KC, Hudson MM, Mertens AC, Smith SM, Mitby PA, Eshelman-Kent DA, Ford JS, Jones JK, Kamani S, Robison LL.

    Journal: Pediatr Blood Cancer

  • Long-term health-related outcomes in survivors of childhood cancer treated with HSCT versus conventional therapy: A Report from the Bone Marrow Transplant Survivor Study (BMTSS) and the Childhood Cancer Survivor Study (CCSS).

    2011

    Citation: 118(5): 1413-20

    Author(s): Armenian SH, Sun CL, Kawashima T, Arora M, Leisenring W, Sklar CA, Baker KS, Francisco L, Teh JB, Mills G, Wong FL, Rosenthal J, Diller LR, Hudson MM, Oeffinger KC, Forman SJ, Robison LL, Bhatia S.

    Journal: Blood

  • Long-term Risk for Subsequent Leukemia after Treatment for Childhood Cancer: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(23):6315-8

    Author(s): Nottage K, Lanctot J, Li Z, Neglia JP, Bhatia S, Hammond S, Leisenring W, Meadows A, Srivastava D, Robison LL, Armstrong GT.

    Journal: Blood

  • Morbidity and mortality in long-term survivors of Hodgkin lymphoma: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(6):1806-16

    Author(s): Castellino SM, Geiger AM, Mertens AC, Leisenring WM, Tooze JA, Goodman P, Stovall M, Robison LL, Hudson MM.

    Journal: Blood

  • 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

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