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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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  • The Childhood Cancer Survivor Study-Neurocognitive Questionnaire (CCSS-NCQ) Revised: Item Response Analysis and Concurrent Validity.

    2015

    Citation: 29(1):31-44

    Author(s): Kenzik KM, Huang IC, Brinkman TM, Baughman B, Ness KK, Shenkman EA, Hudson MM, Robison LL, Krull KR.

    Journal: Neuropsychology

  • Conditional Survival in Pediatric Malignancies: Analysis of Data from the Childhood Cancer Survivor Study and the Surveillance, Epidemiology and End Results Program.

    2015

    Citation: 121(7):1108-17

    Author(s): Mertens AC, Yong J, Dietz AC, Kreiter E, Yasui Y, Bleyer A, Armstrong GT, Robison LL, Wasilewski-Masker K.

    Journal: Cancer

  • Health care utilization, lifestyle, and emotional factors and mammography practices in the Childhood Cancer Survivor Study.

    2015

    Citation: 24(11):1699-706

    Author(s): Rosenberg SM, Moskowitz CS, Ford JS, Henderson TO, Frazier AL, Diller LR, Hudson MM, Stanton AL, Chou JF, Smith S, Leisenring WM, Mertens AC, Nathan PC, Krull KR, Robison LL, Oeffinger KC.

    Journal: Cancer Epidemiol Biomarkers Prev

  • Characterization of Genomic Alterations in Radiation-related Breast Cancer Among Childhood Cancer Survivors using Comparative Genomic Hybridization (CGH) Arrays.

    2015

    Citation: 10(3):e0116078

    Author(s): Yang XR, Killian JK, Hammond S, Burke LS, Bennett H, Wang Y, Davis SR, Strong LC, Neglia J, Stovall M, Weathers RE, Robison LL, Bhatia S, Mabuchi K, Inskip PD, Meltzer P.

    Journal: PLOS ONE

  • Predictors of Colorectal Cancer Surveillance among Childhood Cancer Treated with Radiation: A Report from the Childhood Cancer Survivor Study.

    2015

    Citation: 121(11):1856-63

    Author(s): Daniel CL, Kohler CL, Stratton KL, Oeffinger KC, Leisenring WM, Waterbor JW, Whelan KF, Armstrong GT, Henderson TO, Krull KR, Robison LL, Nathan PC.

    Journal: Cancer

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