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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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  • Cancer Prevention and Screening Practices of Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study.

    2012

    Citation: 21(7): 1078-88

    Author(s): Buchbinder D, Mertens AC, Zeltzer LK, Leisenring W, Goodman P, Lown EA, Alderfer MA, Recklitis C, Oeffinger K, Armstrong GT, Hudson M, Robison LL, Casillas J.

    Journal: Cancer Epidemiol Biomarkers Prev

  • 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

  • Occupational outcomes of adult childhood cancer survivors: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 117(13):3033-44

    Author(s): Kirchhoff AC, Krull KR, Ness KK, Park ER, Oeffinger KC, Hudson MM, Stovall M, Robison LL, Wickizer T, Leisenring W.

    Journal: Cancer

  • Pain in Long-Term Adult Survivors of Childhood Cancers and Their Siblings: A Report from the Childhood Cancer Survivor Study.

    2011

    Citation: 152(11):2616-24

    Author(s): Lu Q, Krull KR, Leisenring W, Owen JE, Kawashima T, Tsao JC, Zebrack B, Mertens A, Armstrong GT, Stovall M, Robison LL, Zeltzer LK.

    Journal: Pain

  • 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

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