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Metastatic Breast Cancer Alliance Releases Thought Leader Update to the Research Chapter of the 2014 Landscape Analysis

MBCA Thought Leader Update 2022

It's exciting to see the insights that have come from this study, and how this data has contributed to our strategic planning process.”
— Liz Frank, Project Lead

NEW YORK, NY, UNITED STATES, April 11, 2022 / -- The Metastatic Breast Cancer Alliance (“the Alliance”) announced today the release of a report detailing learnings from Thought Leaders in metastatic breast cancer (MBC) research. The goals of this new report were to understand recent progress and future directions in MBC research, and to use this information to inform the MBC Alliance’s 5-year strategic plan.

In 2014, the Alliance published its first landscape analysis, Changing the Landscape for People Living with Metastatic Breast Cancer. This pivotal document was used to inform the Alliance’s initiatives as a newly formed organization. A section of Chapter 2 of this report described the results of interviews conducted with Thought Leaders (then called Key Opinion Leaders) regarding the landscape of MBC research at that time.

In 2020, the Alliance began a project to update this content. The objective was to understand the current landscape of MBC research, including recent (~5 years) progress in MBC research for improving outcomes and quality of life for individuals living with MBC; new treatments and areas of research and technology with the most potential (in the next ~5 years) to advance our understanding of MBC; the various aspects of clinical trial participation that impact people living with MBC; and priorities for the Alliance.

The first step was to conduct interviews with 20 Thought Leaders. A breadth of knowledge was sought, with interviewees comprising those working in academia, industry, government, nonprofit organizations, and the research community. Interviews also included people living with MBC and MBC patient advocates, to provide the voice and perspective of people with firsthand experience.

Next, based on the learnings from these interviews, a survey was developed that was sent in Spring 2021 to a larger pool of participants in the MBC community. The report release today, Thought Leader Survey Report, describes the learnings gathered from 119 survey respondents, representing those same stakeholder groups.

Key findings included recent progress in treatments for HER2-positive MBC and estrogen receptor-positive MBC, with clinicians most frequently identifying progress in this area. Recent progress in understanding the role of the immune system and tumor microenvironment was identified, and these were also identified as areas of potential new treatments, with high levels of enthusiasm from researchers. Liquid biopsies were highly rated by all groups for their potential to improve outcomes and quality of life. Key areas of need in clinical trials included increasing trust and improving education and diversity, with differences noted among the stakeholder groups.

Liz Frank, the Thought Leader Project Lead, commented: “It's exciting to see the insights that have come from this study, and how this data has contributed to our strategic planning process”.

Several priorities for the Alliance were identified including education for patients and advocates about basic research, clinical trial endpoints, and genetic testing; education for researchers about the realities of living with MBC and meaningful collaborations with patient advocates; and education for clinicians about the value of patient registries. An assessment of resources offered by member organizations can also be done by the Alliance to identify programming gaps related to clinical trials, education, collateral damage, and conversations about MBC in all breast cancer communities.

Advocacy efforts were also identified including promoting liquid biopsies in clinical trials, continued availability of telehealth, increased access to serial biopsies from all populations, data sharing, patient-centric trial design, and the inclusion of patient-reported outcomes in clinical trials. In addition, the Alliance can support and continue to support collaboration among stakeholders, big data efforts, interactions between the Alliance and its member organizations to reach common goals, and the value of registries including MBC Connect.

Read or download an Executive Summary of the new report HERE.
Read or download the full Thought Leader Update report HERE.

About the MBC Alliance
The Metastatic Breast Cancer Alliance is a consortium made up of representatives from 34 nonprofit organizations and 11 international pharmaceutical or biotech companies, along with 26 individual patient advocate members – many of whom are living with MBC. The mission of the MBC Alliance is to improve the lives of, and outcomes for, those living with MBC and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding specifically focused on metastasis that has the potential to extend life, enhance quality of life, and ultimately to cure.

Learn more about the MBC Alliance at For people living with MBC, the Alliance website provides a comprehensive list of organizations, programs, and resources focused on meeting the needs of people living with MBC.

Dana Mooney
Metastatic Breast Cancer Alliance
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