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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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  • Frequency of pathogenic germline variants in cancer-susceptibility genes in patients with osteosarcoma.

    2020

    Citation: 6(5):724-734

    Author(s): Mirabello L, Zhu B, Koster R, Karlins E, Dean M, Yeager M, Gianferante M, Spector L, Morton L, Karyadi D, Robison LL, Armstrong GT, Bhatia S, Song L, Pankratz N, Pinheiro M, Gastier-Foster JM, Gorlick R, de Toledo SRC, Petrilli AS, Patiño-Garcia A, Lecanda F, Gutierrez-Jimeno M, Serra M, Hattinger C, Picci P, Scotlandi K, Flanagan AM, Tirabosco R, Amary AF, Kurucu N, Ilhan IE, Ballinger ML, Thomas DM, Barkauskas DA, Mejia-Baltodano G, Valverde P, Hicks BD, Zhu B, Wang M, Hutchinson AA, Tucker M, Sampson J, Landi MT, Freedman ND, Gapstur S, Carter B, Hoover RN, Chanock SJ, Savage SA.

    Journal: JAMA Oncol

  • Genetic variation in POT1 and risk of thyroid subsequent malignant neoplasm: a report from the Childhood Cancer Survivor Study.

    2020

    Citation: 15(2):e0228887

    Author(s): Richard MA, Lupo PJ, Morton LM, Yasui Y, Sapkota Y, Arnold MA, Aubert G, Neglia JP, Turcotte LM, Leisenring WM, Sampson JN, Chanock SJ, Hudson MM, Armstrong GT, Robison LL, Bhatia S, Gramatges MM.

    Journal: PLOS ONE

  • Incidence of and risk factors for late cholecystectomy in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.  

    2020

    Citation: 133:4-13

    Author(s): Dieffenbach BV, Li N, Madenci AL, Murphy AJ, Barnea D, Gibson TM, Tonorezos ES, Leisenring WM, Howell RM, Diller LR, Liu Q, Chow EJ, Armstrong GT, Yasui Y, Oeffinger KC, Weldon CB, Weil BR.

    Journal: Eur J Cancer

  • 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

  • Late mortality and chronic health conditions in long-term survivors of early-adolescent and young adult cancers: a retrospective cohort analysis from the Childhood Cancer Survivor Study.

    2020

    Citation: 21(3):421-435

    Author(s): Suh E, Stratton KL, Leisenring WM, Nathan PC, Ford JS, Freyer DR, McNeer J, Stock W, Stovall M, Krull KR, Sklar CA, Neglia JP, Armstrong GT, Oeffinger KC, Robison LL, Henderson TO.

    Journal: Lancet Oncol

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