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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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  • Characterization of chronic pain, pain interference, and daily pain experiences in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

    2024

    Citation: 165(11):2530-2543

    Author(s): Alberts NM, Leisenring W, Whitton J, Stratton K, Jibb L, Flynn J, Pizzo A, Brinkman TM, Birnie K, Gibson TM, McDonald A, Ford J, Olgin JE, Nathan PC, Stinson JN, Armstrong GT

    Journal: Pain

  • Chronic health conditions and longitudinal employment in survivors of childhood cancer

    2024

    Citation: 7(5):e2410731

    Author(s): Bhatt NS, Goodman P, Leisenring WM, Armstrong GT, Chow EJ, Hudson MM, Krull KR, Nathan PC, Oeffinger KC, Robison LL, Kirchhoff AC, Mulrooney DA

    Journal: JAMA Netw Open

  • Comparison of GWAS results between de novo tinnitus and cancer treatment-related tinnitus suggests distinctive roles for genetic risk factors

    2024

    Citation: 14(1):27952

    Author(s): Shahbazi M, Wheeler HE, Armstrong GT, Frisina RD, Travis LB, Dolan ME

    Journal: Sci Rep

  • Continuity and coordination of care for childhood cancer survivors with multiple chronic conditions: results from the Childhood Cancer Survivor Study

    2024

    Citation: 130(24):4347-4359

    Author(s): Snyder C, Smith KC, Leisenring WM, Stratton KL, Boyd CM, Choi Y, Dean LT, Hudson MM, Chow EJ, Oeffinger KC, Park ER, McDonald AJ, Armstrong GT, Nathan PC

    Journal: Cancer

  • Evolving therapies, neurocognitive outcomes and functional independence in adult survivors of childhood glioma

    2024

    Citation: 116(2):288-298

    Author(s): Papini C, Mirzaei S, Xing M, Olsson I, de Blank P, Lange KR, Salloum R, Srivastava D, Leisenring WM, Howell RM, Oeffinger KC, Robison LL, Armstrong GT, Krull KR, Brinkman TM

    Journal: J Natl Cancer Inst

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