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杜克炎性乳腺癌联盟对炎性乳腺癌(IBC)研究、临床管理及社区参与的见解

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

作者信息

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

机构信息

Duke Cancer Institute, Duke University.

Department of Surgery, Duke University.

出版信息

J Cancer. 2019 Jun 4;10(15):3344-3351. doi: 10.7150/jca.31176. eCollection 2019.

DOI:10.7150/jca.31176
PMID:31293637
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6603420/
Abstract

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.

摘要

炎性乳腺癌(IBC)是一种研究不足且侵袭性强的乳腺癌,预后较差,在美国占新发乳腺癌诊断病例的2%-6%,但在所有乳腺癌相关死亡病例中占10%。目前尚无专门针对IBC开发的治疗方案,必须认识到,治疗IBC的各个方面——包括分期、诊断和治疗——都与其他乳腺癌有很大不同。2014年12月,在杜克大学医学院支持的一项跨学科倡议框架下,研究人员、临床医生、研究管理人员和患者权益倡导者组成了杜克炎性乳腺癌联盟,以满足北卡罗来纳州(一个拥有100个县、种族和经济多元化的州)以及美国东南部患者的需求。该组织的主要目标是将研究转化为行动,并通过与地方、国家和国际IBC项目合作,提高认识并改善患者护理。该联盟于2018年2月28日举行了首次会议,这一天也是罕见病日,会议召集了全国研究专家、临床医生、患者、权益倡导者、政府代表、基金会领导人、工作人员和学员。会议聚焦于IBC临床管理中的新进展和挑战、研究挑战与机遇,以及一场互动环节,以收集患者、权益倡导者和社区合作伙伴的意见,为持续改善IBC患者护理、研究和教育的战略计划提供信息。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/205c/6603420/9b2a0062d896/jcav10p3344g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/205c/6603420/9b2a0062d896/jcav10p3344g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/205c/6603420/9b2a0062d896/jcav10p3344g001.jpg

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