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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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  • Longitudinal pain and pain interference in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 126(12):2915-2923

    Author(s): Karlson CW, Alberts NM, Liu W, Brinkman TM, Annett RD, Mulrooney DA, Schulte F, Leisenring WM, Gibson TM, Howell RM, Srivastava D, Oeffinger KC, Robison LL, Armstrong GT, Zeltzer LK, Krull KR.

    Journal: Cancer

  • 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

  • Major cardiac events for adult survivors of childhood cancer diagnosed between 1970 and 1999: report from the Childhood Cancer Survivor Study cohort.

    2020

    Citation: 368:I6794

    Author(s): Mulrooney DA, Hyun G, Ness KK, Ehrhardt MJ, Yasui Y, Duprez D, Howell RM, Leisenring WM, Constine LS, Tonorezos E, Gibson TM, Robison LL, Oeffinger KC, Hudson MM, Armstrong GT.

    Journal: BMJ

  • Negligible effects of the survey modes for patient-reported outcomes: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 4:10-24

    Author(s): Sim JA, Hyun G, Gibson TM, Yasui Y, Leisenring W, Hudson MM, Robison LL, Armstrong GT, Krull KR, Huang IC.

    Journal: JCO Clin Cancer Inform

  • 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

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