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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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  • Primary care utilization and cardiovascular screening in adult survivors of childhood cancer

    2023

    Citation: 6(12):e2347449

    Author(s): Ohlsen TJD, Chen Y, Baldwin L, Hudson MM, Nathan PC, Snyder C, Syrjala KL, Tonorezos ES, Yasui Y, Armstrong GT, Oeffinger KC, Chow EJ

    Journal: JAMA Netw Open

  • Inflated expectations: rare-variant association analysis using public controls

    2023

    Citation: (1):e0280951

    Author(s): Kim J, Karyadi DM, Hartley SW, Zhu B, Wang M, Wu D, Song L, Armstrong GT, Bhatia S, Robison LL, Yasui Y, Carter B, Sampson JN, Freedman ND, Goldstein AM, Mirabello L, Chanock SJ, Morton LM, Savage SA, Stewart DR

    Journal: PLoS One

  • Chronic conditions, late mortality, and health status after childhood AML: a Childhood Cancer Survivor Study report

    2023

    Citation: 141(1):90-101

    Author(s): Turcotte LM, Whitton JA, Leisenring WM, Howell RM, Neglia JP, Phelan R, Oeffinger KC, Ness KK, Woods WG, Kolb EA, Robison LL, Armstrong GT, Chow EJ

    Journal: Blood

  • Health benefits and cost-effectiveness of Children’s Oncology Group breast cancer screening guidelines for chest-irradiated Hodgkin Lymphoma survivors

    2023

    Citation: 41(5):1046-1058

    Author(s): Wong FL, Lee JM, Leisenring WM, Neglia JP, Howell RM, Smith SA, Oeffinger KC, Moskowitz CS, Henderson TO, Mertens A, Nathan PC, Yasui Y, Landier W, Armstrong GT, Robison LL, Bhatia S

    Journal: J Clin Oncol

  • Late health outcomes among survivors of Wilms tumor diagnosed over three decades: a report from the Childhood Cancer Survivor Study

    2023

    Citation: 41(14):2638-2650

    Author(s): Weil BR, Murphy AJ, Liu Q, Howell RM, Smith SA, Weldon CB, Mullen EA, Madenci AL, Leisenring WM, Neglia JP, Turcotte LM, Oeffinger KC, Termuhlen AM, Mostoufi-Moab S, Levine JM, Krull KR, Yasui Y, Robison LL, Armstrong GT, Chow EJ, Armenian SH

    Journal: J Clin Oncol

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