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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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  • Hypothyroidism after radiation therapy for childhood cancer: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 190(2):117-132

    Author(s): Inskip PD, Veiga LHS, Brenner AV, Sigurdson AJ, Ostroumova E, Chow EJ, Stovall M, Smith SA, Weathers RE, Leisenring W, Robison LL, Armstrong GT, Sklar CA, Lubin JH.

    Journal: Radiat Res

  • Long-term psychological and educational outcomes for survivors of neuroblastoma: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 124(15):3220-3230

    Author(s): Zheng DJ, Krull KR, Chen Y, Diller L, Yasui Y, Leisenring WM, Brouwers P, Howell R, Lai JS, Balsamo L, Oeffinger KC, Robison LL, Armstrong GT, Kadan-Lottick NS.

    Journal: Cancer

  • Nonsurgical premature menopause and reproductive implications in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. 

    2018

    Citation: 124(5):1044-1052

    Author(s): Levine JM, Whitton JA, Ginsberg JP, Green DM, Leisenring WM, Stovall M, Robison LL, Armstrong GT, Sklar CA.

    Journal: Cancer

  • Genome-wide association study identifies multiple new loci associated with Ewing sarcoma susceptibility.

    2018

    Citation: 9(1):3184

    Author(s): Machiela MJ, 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, Gaspar N, Kontny U, González-Neira A, Picci P, Alonso J, Patino-Garcia A, Corradini N, Bérard PM, Freedman ND, Rothman N, 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, Hartmann W, Strauch K, Kirchner T, Dirksen U, Morton LM, Mirabello L, Tucker MA, Tirode F, Chanock SJ, Delattre O.

    Journal: Nat Commun

  • Assessing health insurance coverage characteristics and impact on health care costs, worry and access: a report from the Childhood Cancer Survivor Study.

    2017

    Citation: 117(12);1855-1858

    Author(s): Park ER, Kirchhoff AC, Nipp RD, Donelan K, Leisenring WM, Armstrong GT, Kuhlthau KA.

    Journal: JAMA Intern Med

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