People living with MBC find it difficult to locate and identify clinical trials most likely to be relevant to their unique situation. There are a number of factors that must be considered, including: the need to find trials based on disease subtype, the location of metastatic disease, the number of lines of prior therapy, and finding a trial near where a patient lives. To help address patient access to clinical trials, the Alliance worked on two initiatives. First, the Alliance worked with its member in developing a new tool, METASTATIC TRIAL SEARCH. Second, the Alliance developed a new data visualization tool, "The Bubble Charts", to allow MBC patients to more easily search and sort through the voluminous amount of available clinical trial data.

Metastatic Trial Search (MTS)

In October 2015, five Alliance advocacy groups joined with to develop and pilot the new MTS TOOL.
  • 13,450 total page views of MTS in Year 1 (October 2015 - September 2016) (1)
    • 2866 page views in October 2015, which coincided with the social media campaign
    • November 2015 - September 2016 had an average of 1,010 page views per month
  • Patient users responded to a survey of the MTS site and reported:(N=102) (1)
    • 80% agree MTS met an unmet need
    • 88% found the tool via an advocacy group
    • 63% sought treatment trials
    • 7% enrolled in clinical trials
    • 29% are considering clinical trials
In 2016, the Alliance supported the expansion of MTS availability from 6 to 13 organizational websites. Metastatic Trial Search is now available at:
Bubble Charts: A clinical trial data visualization tool
The Alliance developed and launched their new visual tool - " THE BUBBLE CHARTS" - to easily sort clinical trial information. The concept was pioneered by nonprofits working on multiple sclerosis. They reported that their patient community found that a visual way to quickly sort clinical trials by predefined criteria provided easier to understand access versus scrolling through dozens and dozens of pages of results returned from searches conducted at The Alliance followed this approach to develop a similar tool for visualizing breast cancer clinical trials.

  • The Alliance extracts active trial information from and then codes to specific categories (breast cancer subtype, line of therapy, trial phase, sponsor type, compound and hallmark of cancer)
  • The underlying data, accessible via the bubble charts, contains information on trials that are actively recruiting patients
  • The data is updated quarterly
  • In 2016, the 438 unique views and an 82% bounce rate suggest users are leveraging multiple views of the bubble charts 

Population data on metastatic breast cancer is lacking. While individuals who are originally diagnosed with metastatic breast cancer are captured in State and National registries, individuals who experience metastatic recurrence are not. It is critical to know the number of people living with MBC today, including numbers from patients with early stage disease who have experienced a recurrence. We also need better population data on quality of life issues to more successfully advocate for the needs of people living with metastatic breast cancer.
The MBC Alliance partnership with SEER

In mid-2015, the Alliance began a partnership with statisticians at the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) to model the best estimates of population data on metastatic breast cancer patients.
  • A manuscript entitled Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States has been accepted for publication
  • Publication is anticipated for May 2017 in the journal Cancer Epidemiology, Biomarkers & Prevention
  • SEER launched a special Request for Proposals to provide supplemental funding to SEER registry sites to test new methods to improve the data the sites capture, including capture of recurrences, detailed tumor data, and quality of life information. Awards are anticipated by December 2017.
The MBC Alliance partnership with the Swedish Cancer Institute

The Alliance launched another new partnership, in May of 2016, with the Swedish Cancer Institute in Seattle, the Pacific Northwest's largest, most comprehensive center devoted to treating cancers that affect women, to get "real-world" data on metastatic disease and recurrences. While this study focused on a single institution, it is a great start on capturing longitudinal population data over time from 1990 through 2010.

The study authors, Drs. Malmgren and Kaplan, presented their early data at the   2016 San Antonio Breast Cancer Symposium . Preliminary findings included that de novo MBC (dnMBC) incidence was constant between 1990 and 2010, while cases of recurrent MBC (rMBC) decreased over the same time. Survival for dnMBC improved during the time period studied, while the outcomes for rMBC declined. The authors concluded that the composition of cases, number of hormone-sensitive, HER2+ or triple-negative breast cancers, likely explained the decrease in incidence of recurrent cases and the decreased survival in recurrent disease which shifted to more predominantly triple-negative disease.

  • Incidence 1990-2010
    • dnMBC constant 3% annually
    • rMBC decreased 18% to 7%(P<0.001)
    • HER2+ cases decreasing, ER- cases increasing
    • Mean Survival3
    • Post diagnosis 5.03 years for dnMBC and 2.81 years for rMBC
    • 5-year survival was 44% dnMBC versus 21% rMBC(P<0.001)
  • Survival changes over time
    • dnMBC 5-year survival improved 28% to 55%(p=0.008)
    • rMBC 5-year survival declined 23% to 13%(P=0.07)
  • Improved outcomes for dnMBC are most likely related to advances intherapy
  • Incidence of distant rMBCdeclined dramatically over time, and specifically for HER2+ and ER+
  • The rMBC survival rate remained unimproved due to relative change in composition to more Triple Negative Breast Cancer
The limitations of this study are that the data represents breast cancer cases from one individual hospital with a relatively homogenous population in the Pacific Northwest. As a next step, the Alliance is working to start similar collaborations with hospitals whose longitudinal registries in other parts of the country analyze how MBC incidence and outcomes have changed over time in their institutions.  

The MBC Alliance convenes Key Opinion Leader Forums

In January 2016, the Alliance engaged researchers, clinicians and experts from academia, the NCI, the FDA, industry, patients, and patient advocacy groups to discuss how to increase the amount of research on metastatic breast cancer, accelerate the pace of research on MBC and update clinical trial designs to address the needs of patients living with metastatic breast cancer. The priorities that emerged from several meetings last year are informing the work of the Alliance in 2017 and beyond.

The priorities that emerged from the discussions include:
  • the need for innovative pre-clinical model systems to study metastatic disease
  • the need for increased sharing of MBC resources and data, more collaborations across cancer care teams and scientists
  • better coordination of MBC biorepositories
  • creation of patient registries to increase access to clinical trials and tissue procurement
  • the redesign of clinical trial endpoints to expand beyond tumor shrinkage and include quality of life (QOL) endpoints, such as alleviation of pain, for patients
MBC Alliance develops a Call-to-Action for Exceptional Responders Research

An MBC patient, active on the Research Task Force, suggested the Alliance research the topic of "exceptional responders". The result was the development of an Alliance white paper and opinion piece that represents a call-to-action to researchers to study those people living with metastatic breast cancer that have an exceptional response. The call-to- action has been developed into two formats: (i) an opinion piece written for a peer-reviewed medical journal that aims to reach the broader medical research community; and, (ii) a companion white paper that dives deeper into topics of interest to patients such as complementary and integrative medicine, among many other topics.
  • An opinion piece and perspective manuscript entitled Moonshots and metastatic disease: the need for a multi- faceted approach when studying atypical responders has been favorably peer-reviewed and accepted for publication in Nature Partner Journal: BreastCancer, anticipated for April 2017.
  • The companion white paper will be self-published by the Alliance later this year. 
Early in 2016, the Alliance began working with Worldwide Breast Cancer to develop and deliver the Metastatic Breast Cancer Communication Toolkit, aka The Dandelion Project.

The DANDELION PROJECT  is a first-of-its-kind approach to information for metastatic breast cancer patients and their families. Designed using a unique set of visual tools for doctors, nurses and healthcare providers, the toolkit will help address the existing communications challenges, increase patient engagement, and facilitate alignment of patient and healthcare team goals.

The Alliance's Dandelion Project is currently being pilot-tested at seven cancer centers. Feedback from the pilot tests will inform any refinement in the design of the toolkit prior to broader dissemination which is expected later this year. The Dandelion Project was presented and featured at three conferences in 2016 to expand interest from the healthcare community.
One of the gap areas identified in the Landscape Analysis was a lack of public awareness about metastatic breast cancer. In response, the Alliance launched the "Help Keep Me in the Picture" campaign as a communication initiative to shine a spotlight on metastatic disease during Breast Cancer Awareness Month in October of 2016.

This highly successful campaign resulted in more than 2 million engagements via the Alliance's Facebook and Twitter social media channels. The accompanying press release was distributed to news outlets at the end of September 2016 and reached a potential audience of over 11.7 million, with total pickup of 245 publications.
One component of the campaign was the launch of a petition spearheaded by Awareness Task Force Co- chair and MBC patient, Katherine O'Brien. As the petition explains, our population-based cancer registries (e.g., SEER, CDC Division of Cancer Prevention and Control, North American Association of Central Cancer Registries, state and local cancer registries) currently do not count metastatic recurrences, which is how most patients join the MBC ranks. As of 2016, the databases only count first diagnosis, initial treatment and mortality information. We need more accurate MBC statistics. The petition resonated with people; we are close to 6,000 signatures today with a goal of reaching 10,000 before presentation to the target audiences. 

We are finalizing our next steps for promoting this petition, including postcards and a social media campaign showcased at the Young Survival Coalition Summit, the Living Beyond Breast Cancer Thriving Together Conference on Metastatic Breast Cancerand at various Alliance member-sponsored events and national breast cancer conferences this year.
The Alliance is delivering a series of initiatives designed in response to the key findings of our LANDSCAPE ANALYSIS report. These include: accelerating MBC research by convening key opinion leaders, studying the epidemiology of MBC and developing tools for clinical trials; improving patient-provider communications to increase knowledge of the disease and its treatments, as well as enhance access to information and support; and building understanding of how MBC is different from early stage breast cancer. In 2017, the Alliance will focus on a few key projects in these three strategic areas: Research, Knowledge and Access, and Awareness.

ADVANCING RESEARCH - Advance research focused on extending life, enhancing quality of life and ultimately ending death from MBC. The Alliance will develop new projects based on the recommendations of scientific think tanks convened in 2016 to: (i) help develop innovative and standardized pre-clinical model systems to study MBC;
(ii) help increase the sharing of MBC resources and data, encouraging collaboration across cancer care teams and scientists; (iii) encourage better coordination of MBC biorepositories; (iv) create patient registries to increase access to clinical trials; and (v) encourage the update of clinical trial designs and endpoints.

PROVIDING INFORMATION AND TOOLS TO PATIENTS - Improve knowledge by ensuring all patients and their caregivers know how to, and can, access the care and services they need from a responsive and well informed health care system. In 2017, the Alliance will support current Dandelion Project pilots and add a few additional sites. We also intend to being beta testing at community cancer centers and with partners who work with underserved populations.

Information sharing between Alliance members and the public. To improve information about metastatic breast cancer, the Alliance launched a number of information projects including regular webinars and newsletters where members can update each other on MBC initiatives. The Alliance splash page was upgraded to a more robust website. In 2017, the Alliance will continue these information initiatives to advance dialogue and collaborations, and to promote sharing of information around research priorities.

INCREASING AWARENESS AND EDUCATING THE PUBLIC ABOUT MBC - Increase understanding of MBC and how it differs from early stage breast cancer among those diagnosed, their families, HCPs, researchers and health policy experts. In 2017, the Alliance will continue promotion of our multiplatform national campaign " Help Keep Me in The Picture ." In addition to refining the campaign, the Alliance website will include updates on awareness and education initiatives that support the research priorities of the Alliance.