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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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  • Predicting acute ovarian failure in female survivors of childhood cancer: a cohort study in the Childhood Cancer Survivor Study (CCSS) and the St. Jude Lifetime Cohort (SJLIFE).

    2020

    Citation: 21(3):436-445

    Author(s): Clark RA, Mostoufi-Moab S, Yasui Y, Vu NK, Sklar CA, Motan T, Brooke RJ, Gibson TM, Oeffinger KC, Howell RM, Smith SA, Lu Z, Robison LL, Chemaitilly W, Hudson MM, Armstrong GT, Nathan PC, Yuan Y.

    Journal: Lancet Oncol

  • Low-frequency variation near common germline susceptibility loci are associated with risk of Ewing sarcoma.

    2020

    Citation: 15(9):e0237792

    Author(s): Lin S, Sampson JN, Grünewald TGP, Surdez D, Reynaud S, Mirabeau O, Karlins E, Rubio RA, Zaidi S, Grossetete-Lalami S, Ballet S, Lapouble E, Laurence V, Michon J, Pierron G, Kovar H, Kontny U, González-Neira A, Alonso J, Patino-Garcia A, Corradini N, Bérard PM, Miller J, Freedman ND, Rothman N, Carter BD, Dagnall CL, Burdett L, Jones K, Manning M, Wyatt K, Zhou W, Yeager M, Cox DG, Hoover RN, Khan J, Armstrong GT, Leisenring WM, Bhatia S, Robison LL, Kulozik AE, Kriebel J, Meitinger T, Metzler M, Krumbholz M, Hartmann W, Strauch K, Kirchner T, Dirksen U, Mirabello L, Tucker MA, Tirode F, Morton LM, Chanock SJ, Delattre O, Machiela MJ.

    Journal: PLoS One

  • Prescription psychoactive medication use in adolescent survivors of childhood cancer and association with adult functional outcomes.

    2020

    Citation: 4(5):pkaa057

    Author(s): Cheung YT, Liu W, Brinkman TM, Srivastava D, Leisenring WM, Howell RM, Ullrich NJ, Lommel KM, Brouwers P, Gibson TM, Robison LL, Armstrong GT, Krull KR.

    Journal: JNCI Cancer Spectr

  • Wearable respiratory monitoring and feedback for chronic pain in adult survivors of childhood cancer: a feasibility randomized controlled trial from the Childhood Cancer Survivor Study.

    2020

    Citation: 4:1014-1026

    Author(s): Alberts NM, Leisenring WM, Flynn JS, Whitton J, Gibson TM, Jibb L, McDonald A, Ford J, Moraveji N, Dear BF, Krull KR, Robison LL, Stinson JN, Armstrong GT.

    Journal: JCO Clin Cancer Inform

  • Late morbidity and mortality in adult survivors of childhood glioma with Neurofibromatosis Type 1: report from the Childhood Cancer Survivor Study.

    2020

    Citation: 22(11):1794-1802

    Author(s): de Blank P, Li N, Fisher MJ, Ullrich NJ, Bhatia S, Yasui Y, Sklar CA, Leisenring W, Howell R, Oeffinger K, Hardy K, Okcu MF, Gibson TM, Robison LL, Armstrong GT, Krull KR.

    Journal: Genet Med

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