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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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  • Risk of Subsequent Neoplasms in the Fifth and Sixth Decades of Life in the Childhood Cancer Survivor Study Cohort.

    2015

    Citation: 33(31):3568-75

    Author(s): Turcotte LM, Whitton JA, Friedman DL, Hammond S, Armstrong GT, Leisenring W, Robison LL, Negalia JP.

    Journal: J Clin Oncol

  • Subsequent Neoplasms in Survivors of Childhood Central Nervous System Tumors: Risk After Modern Multimodal Therapy.

    2015

    Citation: 17(3):448-56

    Author(s): Tsui K, Gajjar A, Li C, Srivastava D, Broniscer A, Wetmore C, Kun LE, Merchant TE, Ellison DW, Orr BA, Boop FA, Klimo P, Ross J, Robison LL, Armstrong GT.

    Journal: Neuro Oncol

  • Supplemental Security Income and Social Security Disability Insurance Coverage among Adult, Long-Term Childhood Cancer Survivors.

    2015

    Citation: 107(6):djv057

    Author(s): Kirchhoff AC, Parsons HM, Kuhlthau KA, Leisenring W, Donelan K, Warner EL, Armstrong GT, Robison LL, Oeffinger KC, Park ER.

    Journal: J Natl Cancer Inst

  • Survivors of Childhood Cancer in the United States: Prevalence and Burden of Morbidity.

    2015

    Citation: 24(4):653-63

    Author(s): Phillips SM, Padgett L, Leisenring W, Stratton KK, Bishop K, Krull KR, Alfano CM, Gibson TMdeMoor JS, Hartigan DB, Armstrong GT, Robison LL, Rowland JH, Oeffinger KC, Mariotto AB.

    Journal: Cancer Epidemiol Biomarkers Prev

  • 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

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