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

advocacy breast cancer community engagement inflammatory breast cancer orphan disease patient-centered

Journal

Journal of Cancer
ISSN: 1837-9664
Titre abrégé: J Cancer
Pays: Australia
ID NLM: 101535920

Informations de publication

Date de publication:
2019
Historique:
received: 02 11 2018
accepted: 12 04 2019
entrez: 12 7 2019
pubmed: 12 7 2019
medline: 12 7 2019
Statut: epublish

Résumé

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.

Identifiants

pubmed: 31293637
doi: 10.7150/jca.31176
pii: jcav10p3344
pmc: PMC6603420
doi:

Types de publication

Journal Article Review

Langues

eng

Pagination

3344-3351

Subventions

Organisme : NCATS NIH HHS
ID : KL2 TR002554
Pays : United States
Organisme : NCI NIH HHS
ID : P20 CA202924
Pays : United States
Organisme : NCI NIH HHS
ID : P20 CA202925
Pays : United States
Organisme : NCI NIH HHS
ID : P30 CA014236
Pays : United States

Déclaration de conflit d'intérêts

Competing Interests: The authors have declared that no competing interest exists.

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Auteurs

Gayathri R Devi (GR)

Duke Cancer Institute, Duke University.
Department of Surgery, Duke University.
Department of Pathology, Duke University.

Holly Hough (H)

Duke Office of Clinical Research, Duke University.

Nadine Barrett (N)

Duke Cancer Institute, Duke University.

Massimo Cristofanilli (M)

Department of Medicine, Northwestern University.

Beth Overmoyer (B)

Department of Medical Oncology, Dana-Farber Cancer Institute.

Neil Spector (N)

Duke Cancer Institute, Duke University.
Department of Medicine, Duke University.

Naoto T Ueno (NT)

Department of Breast Medical Oncology, University of Texas MD Anderson Cancer Center.

Wendy Woodward (W)

Department of Radiation Oncology, University of Texas MD Anderson Cancer Center.

John Kirkpatrick (J)

Duke Cancer Institute, Duke University.
Department of Radiation Oncology, Duke University.

Benjamin Vincent (B)

Division of Hematology/Oncology, University of North Carolina at Chapel Hill.

Kevin P Williams (KP)

Department of Pharmaceutical Sciences, North Carolina Central University.

Charlotte Finley (C)

Duke Cancer Institute, Duke University.

Brandi Duff (B)

Duke Cancer Institute, Duke University.

Valarie Worthy (V)

Duke Cancer Institute, Duke University.

Shannon McCall (S)

Duke Cancer Institute, Duke University.
Department of Pathology, Duke University.

Beth A Hollister (BA)

Department of Surgery, Duke University.

Greg Palmer (G)

Duke Cancer Institute, Duke University.
Department of Radiation Oncology, Duke University.

Jeremy Force (J)

Duke Cancer Institute, Duke University.
Department of Medicine, Duke University.

Kelly Westbrook (K)

Duke Cancer Institute, Duke University.
Department of Medicine, Duke University.

Oluwadamilola Fayanju (O)

Duke Cancer Institute, Duke University.
Department of Surgery, Duke University.

Gita Suneja (G)

Duke Cancer Institute, Duke University.
Department of Radiation Oncology, Duke University.

Susan F Dent (SF)

Duke Cancer Institute, Duke University.

E Shelley Hwang (ES)

Duke Cancer Institute, Duke University.
Department of Surgery, Duke University.

Steven R Patierno (SR)

Duke Cancer Institute, Duke University.
Department of Medicine, Duke University.

P Kelly Marcom (PK)

Duke Cancer Institute, Duke University.
Department of Medicine, Duke University.

Classifications MeSH