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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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  • Chronic health conditions and neurocognitive function in aging survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

    2018

    Citation: 110(4):411-419

    Author(s): Cheung YT, Brinkman TM, Li C, Mzayek Y, Srivastava D, Ness KK, Patel SK, Howell RM, Oeffinger KC, Robison LL, Armstrong GT, Krull KR.

    Journal: J Natl Cancer Inst

  • Factors associated with physical activity among adolescent and young adult survivors of early childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS).

    2018

    Citation: 27(2):613-619

    Author(s): Devine KA, Mertens AC, Whitton JA, Wilson CL, Ness KK, Gilleland Marchak J, Leisenring W, Oeffinger KC, Robison LL, Armstrong GT, Krull KR.

    Journal: Psychooncology

  • 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

  • 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

  • Insurance, chronic health conditions, and utilization of primary and specialty outpatient services: a Childhood Cancer Survivor Study report.

    2018

    Citation: 12(5):639-646

    Author(s): Mueller EL, Park ER, Kirchhoff AC, Kuhlthau K, Nathan PC, Perez GK, Rabin J, Hutchinson R, Oeffinger KC, Robison LL, Armstrong GT, Leisenring WM, Donelan K.

    Journal: J Cancer Surviv

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