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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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  • Mechanisms of sleep disturbances in long-term cancer survivors: a Childhood Cancer Survivor Study report

    2024

    Citation: 8(2):pkae010

    Author(s): Daniel LC, Wang H, Brinkman TM, Ruble K, Zhou ES, Palesh O, Stremler R, Howell RM, Mulrooney DA, Crabtree VM, Mostoufi-Moab S, Oeffinger KC, Neglia J, Yasui Y, Armstrong GT, Krull KR

    Journal: JNCI Cancer Spectr

  • The ENGAGE study: a 3-arm randomized hybrid type 1 effectiveness and implementation study of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic services in childhood cancer survivors

    2024

    Citation: 24(1):253

    Author(s): Henderson TO, Allen MA, Mim R, Egleston B, Fleisher L, Elkin E, Oeffinger K, Krull K, Ofidis D, Mcleod B, Griffin H, Wood E, Cacioppo C, Weinberg M, Brown S, Howe S, McDonald A, Vukadinovich C, Alston S, Rinehart D, Armstrong GT, Bradbury AR.

    Journal: BMC Health Serv Res

  • Characterization of chronic pain, pain interference, and daily pain experiences in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 165(11):2530-2543

    Author(s): Alberts NM, Leisenring W, Whitton J, Stratton K, Jibb L, Flynn J, Pizzo A, Brinkman TM, Birnie K, Gibson TM, McDonald A, Ford J, Olgin JE, Nathan PC, Stinson JN, Armstrong GT

    Journal: Pain

  • Temporal changes in treatment and late mortality and morbidity in adult survivors of childhood Glioma: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 5(4):590-600

    Author(s): De Blank PMK, Lange KR, Xing M, Mirzaei Salehabadi S, Srivastava D, Brinkman TM, Ness KK, Oeffinger KC, Neglia J, Krull KR, Nathan PC, Howell R, Turcotte LM, Leisenring W, Armstrong GT, Okcu MF, Bowers DC

    Journal: Nat Cancer

  • Statistical analysis of self-reported health conditions in cohort studies: handling of missing onset age

    2024

    Citation: 173(2024):111458

    Author(s): Mirzaei S, Martínez JM, Izumi A, Mori M, Amstrong GT, Yasui Y

    Journal: J Clin Epidemiol

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