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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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  • 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

  • Prevalence of carotid ultrasound screening in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2024

    Citation: Epub Oct 10, 2024

    Author(s): Bryce Y, Whitton JA, Straton K, Leisenring WM, Chow EJ, Armstrong GT, Weil B, Dieffenbach B, Howell RM, Oeffinger KC, Nathan PC, Tonorezos ES

    Journal: Cancer

  • Late subsequent leukemia after childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS)

    2024

    Citation: 13(20):e70086

    Author(s): Ghosh T, Hyun G, Dhaduk R, Conces M, Arnold MA, Howell RM, Henerson TO, McDonald A, Robison LL, Yasui Y, Ness KK, Armstrong GT, Neglia JP, Turcotte LM

    Journal: Cancer Med

  • Late cardiac toxic effects associated with treatment protocols for Hodgkin lymphoma in children

    2024

    Citation: 7(1):e2351062

    Author(s): Lo AC, Liu A, Liu Q, Yasui Y, Castellino SM, Kelly KM, Hererra AF, Friedberg JW, Friedman DL, Schwartz CL, Pei Q, Kessel S, Bergeron-Gravel S, Dama H, Roberts K, Constine LS, Hodgson DC

    Journal: JAMA Netw Open

  • Fear of cancer recurrence in adult survivors of childhood cancer

    2024

    Citation: 7(10):e2436144

    Author(s): Pizzo A, Leisenring WM, Stratton KL, Lamoureux E, Flynn JS, Alschuler K, Krull KR, Jibb LA, Nathan PC, Olgin JE, Stinson JN, Armstrong GT, Alberts NM

    Journal: JAMA Netw Open

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