Perspectives on inflammatory breast cancer (IBC) research, clinical management and community engagement from the duke IBC consortium

Gayathri R. Devi*, Holly Hough, Nadine Barrett, Massimo Cristofanilli, Beth Overmoyer, Neil Spector, Naoto T. Ueno, Wendy Woodward, John Kirkpatrick, Benjamin Vincent, Kevin P. Williams, Charlotte Finley, Brandi Duff, Valarie Worthy, Shannon McCall, Beth A. Hollister, Greg Palmer, Jeremy Force, Kelly Westbrook, Oluwadamilola FayanjuGita Suneja, Susan F. Dent, E. Shelley Hwang, Steven R. Patierno, P. Kelly Marcom

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

16 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)3344-3351
Number of pages8
JournalJournal of Cancer
Issue number15
StatePublished - 2019


  • Advocacy
  • Breast cancer
  • Community engagement
  • Inflammatory breast cancer
  • Orphan disease
  • Patient-centered

ASJC Scopus subject areas

  • Oncology


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