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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 ENGAGE Study: A 3-arm randomized hybrid type 1 effectiveness and implementation study of an In-home. Collaborative PCP model of remote teleogenetic services to increase uptake of cancer genetic services in childhood cancer survivors.


    Citation: In Press

    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

  • Risk factors for neurocognitive impairment, emotional distress and poor quality of life in survivors of pediatric rhabdomyosarcoma: a report from the Childhood Cancer Survivor Study


    Citation: In Press

    Author(s): Van der Plas E, Darji H, Srivastava K, Schapiro M, Jeffe D, Perkins S, Howell R, Leisenring W, Armstrong GT, Oeffinger KC, Krull K, Edelstein K, Hayashi RJ

    Journal: Cancer

  • Job lock among survivors of childhood cancer and their spouses post Affordable Care Act implementation: A Childhood Cancer Survivor Study brief report


    Citation: 71(2):e30790

    Author(s): Waters AR, Liu Q, Ji X, Yasui Y, Yabroff KR, Conti RM, Henderson T, Huang I, Leisenring W, Armstrong GT, Nathan PC, Park E, Kirchhoff AC

    Journal: Pediatr Blood Cancer

  • Assisted reproductive technology use and outcomes in childhood cancer survivors


    Citation: 130(1):128-139

    Author(s): Keefe KW, Lanes A, Stratton K, Green DM, Chow EJ, Oeffinger KC, Barton S, Diller L, Yasui Y, Leisenring WM, Armstrong GT, Ginsburg ES

    Journal: Cancer

  • Association analysis of self-reported outcomes with a validated subset


    Citation: 43(4):642-655

    Author(s): Mirzaei S, Martínez JM, Chow EJ, Ness KK, Hudson MM, Armstrong GT, Yasui Y

    Journal: Stat Med

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