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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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  • Diabetes mellitus and neurocognition: A report from the Childhood Cancer Survivor Study

    2025

    Citation: 131(16):e70011

    Author(s): Webster RT, Mirzaei S, Bhatia S, Srivastava DK, Mostoufi-Moab S, Dixon SB, Chow EJ, Armstrong GT, Krull KR, van der Plas E

    Journal: Cancer

  • Subsequent meningiomas among survivors of childhood cancer

    2025

    Citation: 8(12):e2548715

    Author(s): Bowers DC, Cooney T, Chen Y, Yuan Y, Galvin R, Im C, Leisenring W, Brady SW, Smith SA, Howell RM, Arnold MA, Conces M, Yasui Y, Diller LR, Armstrong GT, Neglia JP, Turcotte LM

    Journal: JAMA Netw Open

  • Investigation of DNA damage response genes validates the role of DNA repair in pediatric cancer risk and identifies SMARCAL1 as novel osteosarcoma predisposition gene

    2025

    Citation: 43(36):3833-3843

    Author(s): Oak N, Chen W, Blake A, Harrison L, O’Brien M, Previti C, Balasubramanian G, Maass K, Hirsch S, Penkert J, Jones BC, Schramm K, Nathrath M, Pajtler KW, Jones DTW, Witt O, Dirksen U, Li J, Sapkota Y, Ness KK, Guenther LM, Pfister SM, Kratz C, Wang Z, Armstrong GT, Hudson MM, Wu G, Autry RJ, Nichols KE, Sharma R

    Journal: J Clin Oncol

  • Symptom burden, healthcare utilization, and risky behaviors in survivors of the Childhood Cancer Survivor Study (CCSS): An observation cohort study

    2025

    Citation: 90:103657

    Author(s): Webster RT, Srivastava DK, Xie L, Darji H, Liu W, McGrady ME, Brinkman TM, Alberts NM, Ness KK, Fuemmeler B, Kunin-Batson AS, Huang IC, Armstrong GT, Howell RM, Green DM, Yasui Y, Krull KR

    Journal: EClinicalMedicine

  • The ENGAGE Study: a randomized trial optimizing uptake of germline cancer genetic services in childhood cancer survivors

    2025

    Citation: Epub Oct 22, 2025

    Author(s): Henderson TO, Egleston B, Howe S, Allen MA, Mim R, Fleisher LG, Elkin EB, Oeffinger KC, Krull KR, Ofidis D, Mcleod B, Griffin H, Wood EM, Cacioppo CN, Brown S, Perpich M, Armstrong GT, Bradbury AR

    Journal: Lancet Reg Health Am

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