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Abdul Rahman Jazieh, Joan S. McClure and Robert W. Carlson

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Robert W. Carlson and on behalf of the NCCN Breast Cancer Panel

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Melinda L. Telli, Kathleen C. Horst, Alice E. Guardino, Frederick M. Dirbas and Robert W. Carlson

Phyllodes tumors of the breast are unusual fibroepithelial tumors that exhibit a wide range of clinical behavior. These tumors are categorized as benign, borderline, or malignant based on a combination of histologic features. The prognosis of phyllodes tumors is favorable, with local recurrence occurring in approximately 15% of patients overall and distant recurrence in approximately 5% to 10% overall. Wide excision with a greater than 1 cm margin is definitive primary therapy. Adjuvant systemic therapy is of no proven value. Patients with locally recurrent disease should undergo wide excision of the recurrence with or without subsequent radiotherapy.

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Elizabeth A. Nardi, Lisa Korin Lentz, Katherine Winckworth-Prejsnar, Amy P. Abernethy and Robert W. Carlson

When used effectively, health information technology (HIT) can transform clinical care and contribute to new research discoveries. Despite advances in HIT and increased electronic health record adoption, many challenges to optimal use, interoperability, and data sharing exist. Data standardization across systems is limited, and scanned medical note documents result in unstructured data that make reporting on quality measures for reimbursement burdensome. Different policies and initiatives, including the Health Information Technology for Economic and Clinical Health Act, the Medicare Access and CHIP Reauthorization Act, and the National Cancer Moonshot initiative, among others, all recognize the impact that HIT can have on cancer care. Given the growing role HIT plays in health care, it is vital to have effective and efficient HIT systems that can exchange information, collect credible data that is analyzable at the point of care, and improves the patient-provider relationship. In June 2016, NCCN hosted the Emerging Issues and Opportunities in Health Information Technology Policy Summit. The summit addressed challenges, issues, and opportunities in HIT as they relate to cancer care. Keynote presentations and panelists discussed moving beyond Meaningful Use, HIT readiness to support and report on quality care, the role of HIT in precision medicine, the role of HIT in the National Cancer Moonshot initiative, and leveraging HIT to improve quality of clinical care.

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Scott V. Bratman, Kathleen C. Horst, Robert W. Carlson and Daniel S. Kapp

Individuals with Down syndrome (DS) are at elevated risk for acute leukemia, whereas solid tumors are uncommon, and most types, including breast cancers, have significantly lower-than-expected age-adjusted incidence rates. This article reports on a man with DS and breast cancer, thought to be the first in the literature, and presents the management of his cancer. The literature on malignancies in patients with DS is reviewed and the major epidemiologic studies that have examined the spectrum of cancer risk in individuals with DS are summarized. Potential environmental and genetic determinants of cancer risk are discussed, and the potential role of chromosomal mosaicism in cancer risk among patients with DS is explored. Trisomy of chromosome 21, which causes DS, provides an extra copy of genes with tumor suppressor or repressor functions. Recent studies have leveraged mouse and human genetics to uncover specific candidate genes on chromosome 21 that mediate these effects. In addition, global perturbations in gene expression programs have been observed, with potential effects on proliferation and self-renewal.

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James McCanney, Terrell Johnson, Lindsey A.M. Bandini, Shonta Chambers, Lynette Bonar and Robert W. Carlson

Demographic factors such as race, socioeconomic status, gender identity, area of residence, native language, and cultural barriers have an effect on outcomes in cancer care. To identify unmet needs, challenges, and opportunities in achieving high-quality, patient-centered cancer care for all, NCCN conducted a yearlong environmental scan, which involved stakeholder meetings with patients and patient advocacy groups to discuss these topics. The findings from this scan informed the corresponding NCCN Patient Advocacy Summit: Advocating for Equity in Cancer Care, held in Washington, DC, on December 10, 2018. In addition to the many patient advocacy groups, the summit featured a number of other stakeholders that advocate for equity in cancer care. This article encapsulates the findings of the environmental scan and the discussion from the NCCN Patient Advocacy Summit.

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Steven J. Schuetz, Claudia B. Soliz P., Maribel Marmol C., Marco A. Vasquez V. and Robert W. Carlson

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Terrell Johnson, Lindsey A.M. Bandini, Kara Martin, Lee Jones, Jennifer Carlson, Ronald S. Walters and Robert W. Carlson

Health policy in America has shifted rapidly over the last decade, and states are increasingly exercising greater authority over health policy decision-making. This localization and regionalization of healthcare policy poses significant challenges for patients with cancer, providers, advocates, and policymakers. To identify the challenges and opportunities that lay ahead of stakeholders, NCCN hosted the 2019 Policy Summit: The State of Cancer Care in America on June 27, 2019, in Washington, DC. The summit featured multidisciplinary panel discussions to explore the implications for access to quality cancer care within a shifting health policy landscape from a patient, provider, and lawmaker perspective. This article encapsulates the discussion from this NCCN Policy Summit.

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James McCanney, Katy Winckworth-Prejsnar, Alyssa A. Schatz, Elizabeth A. Nardi, Andrea J. Dwyer, Christopher Lieu, Yelak Biru and Robert W. Carlson

As a disease, cancer can affect an individual's well-being, from physical to psychological, social, and even spiritual wellness. The cancer survivor population must navigate a complex, constantly evolving field, with the assistance of their care team, to conquer the disease. To address the unmet needs of the cancer survivorship community, NCCN conducted an environmental scan of existing and emerging aspects of survivorship cancer care through stakeholder meetings with survivors and patient advocacy groups to discuss needs, opportunities, and challenges in providing high-quality, patient-centered cancer survivorship care. The findings of this environmental scan directly informed the corresponding NCCN Patient Advocacy Summit: Addressing Survivorship in Cancer Care, held in Washington, DC, on December 1, 2017. In addition to the many patient advocacy groups, the summit featured stakeholders from all relevant areas of survivorship care. This article encapsulates the findings of the thorough environmental scan and the discussion from the NCCN Patient Advocacy Summit, including identified gaps and needs in addressing survivorship in cancer care.

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Katy Winckworth-Prejsnar, Lisa Korin Lentz, Elizabeth A. Nardi, Sandhya Pruthi, C. Lyn Fitzgerald and Robert W. Carlson

In order to empower patients as partners in their healthcare decisions, there is an identified need for value tools that provide enough information to help them make decisions regarding their cancer care journey. NCCN convened a multistakeholder working group to identify the gaps and needs of current value tools and develop a set of findings and recommendations for the evolution of value tools for patients. The findings and recommendations of the working group were then presented at the Value Tools for Patients in Cancer Care Patient Advocacy Summit in December 2016, and multistakeholder roundtable panel discussions explored these findings and recommendations along with additional items. This article encapsulates the discussion from the NCCN Working Group meetings and the NCCN Patient Advocacy Summit, including identified gaps and needs in defining value in cancer care, identified principles and parameters of value tools for patients in cancer care, and consensus statements and recommendations offered by the NCCN Working Group.