J Cancer 2019; 10(15):3344-3351. doi:10.7150/jca.31176 This issue


Perspectives on Inflammatory Breast Cancer (IBC) Research, Clinical Management and Community Engagement from the Duke IBC Consortium

Gayathri R. Devi1,2,3✉, Holly Hough4, Nadine Barrett1, Massimo Cristofanilli5, Beth Overmoyer6, Neil Spector1,7, Naoto T. Ueno8, Wendy Woodward9, John Kirkpatrick1,10, Benjamin Vincent11, Kevin P. Williams12, Charlotte Finley1, Brandi Duff1, Valarie Worthy1, Shannon McCall1,3, Beth A. Hollister2, Greg Palmer1,10, Jeremy Force1,7, Kelly Westbrook1,7, Oluwadamilola Fayanju1,2, Gita Suneja1,10, Susan F. Dent1, E. Shelley Hwang1,2, Steven R. Patierno1,7, P. Kelly Marcom1,7

1. Duke Cancer Institute, Duke University;
2. Department of Surgery, Duke University;
3. Department of Pathology, Duke University;
4. Duke Office of Clinical Research, Duke University;
5. Department of Medicine, Northwestern University;
6. Department of Medical Oncology, Dana-Farber Cancer Institute;
7. Department of Medicine, Duke University;
8. Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center;
9. Department of Radiation Oncology, University of Texas MD Anderson Cancer Center;
10. Department of Radiation Oncology, Duke University;
11. Division of Hematology/Oncology, University of North Carolina at Chapel Hill;
12. Department of Pharmaceutical Sciences, North Carolina Central University.

This is an open access article distributed under the terms of the Creative Commons Attribution (CC BY-NC) license (https://creativecommons.org/licenses/by-nc/4.0/). See http://ivyspring.com/terms for full terms and conditions.
Devi GR, Hough H, Barrett N, Cristofanilli M, Overmoyer B, Spector N, Ueno NT, Woodward W, Kirkpatrick J, Vincent B, Williams KP, Finley C, Duff B, Worthy V, McCall S, Hollister BA, Palmer G, Force J, Westbrook K, Fayanju O, Suneja G, Dent SF, Hwang ES, Patierno SR, Marcom PK. Perspectives on Inflammatory Breast Cancer (IBC) Research, Clinical Management and Community Engagement from the Duke IBC Consortium. J Cancer 2019; 10(15):3344-3351. doi:10.7150/jca.31176. Available from https://www.jcancer.org/v10p3344.htm

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Inflammatory breast cancer (IBC) is an understudied and aggressive form of breast cancer with a poor prognosis, accounting for 2-6% of new breast cancer diagnoses but 10% of all breast cancer-related deaths in the United States. Currently there are no therapeutic regimens developed specifically for IBC, and it is critical to recognize that all aspects of treating IBC - including staging, diagnosis, and therapy - are vastly different than other breast cancers. In December 2014, under the umbrella of an interdisciplinary initiative supported by the Duke School of Medicine, researchers, clinicians, research administrators, and patient advocates formed the Duke Consortium for IBC to address the needs of patients in North Carolina (an ethnically and economically diverse state with 100 counties) and across the Southeastern United States. The primary goal of this group is to translate research into action and improve both awareness and patient care through collaborations with local, national and international IBC programs. The consortium held its inaugural meeting on Feb 28, 2018, which also marked Rare Disease Day and convened national research experts, clinicians, patients, advocates, government representatives, foundation leaders, staff, and trainees. The meeting focused on new developments and challenges in the clinical management of IBC, research challenges and opportunities, and an interactive session to garner input from patients, advocates, and community partners that would inform a strategic plan toward continuing improvements in IBC patient care, research, and education.

Keywords: breast cancer, community engagement, orphan disease, advocacy, patient-centered, inflammatory breast cancer