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
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
3344-3351Subventions
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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