Metastatic Breast Cancer Project designed to empower patients, accelerate treatment advances

The Broad Institute of MIT and Harvard, together with Dana-Farber Cancer Institute and Harvard Medical School, launched a project designed to accelerate the understanding and treatment of metastatic breast cancer.

The collaborative effort, known as The Metastatic Breast Cancer Project, encourages patients to share tumor, saliva and blood samples, along with other clinical information, so they can help inform genomic and molecular research.

Nikhil Wagle

“If we study tumor samples from patients and we apply a lot of our newest technologies on the study of these tumor samples, we can learn a lot about ... the biology of a specific cancer type, as well as identify novel targets for drug development or better understand things like resistance,” Nikhil Wagle, MD, assistant professor of medicine at Harvard Medical School and medical oncologist in the department of medical oncology at Dana-Farber Cancer Institute, said during an interview.

Wagle spoke with HemOnc Today about this effort and the impact it could have on the clinical community.

Question: How did this project come about?

Answer: The motivation behind The Metastatic Breast Cancer Project is that the vast majority of patients with breast cancer in this country are cared for at community centers, not at large academic centers. They are cared for at local doctor’s offices and local hospitals, which provide clinical care but do not necessarily conduct this type of research. The idea was that, if we put out a call and use social media and the internet and partner with patient advocacy groups and patients, we could ask the 85% of patients who are cared for in community settings if they would be willing to donate their tissue samples, medical records and voices to a project like this.

Q: How will the project be carried out?

A: We have a website, www.mbcproject.org, where patients can learn about the project and understand what we are trying to do. Patients who are interested in participating click a button labeled ‘Count Me In.’ They will be asked for their name and email address, and then they will be asked a series of questions about their breast cancer. Once this information is submitted, they are in our database. We launched this project a year ago and, so far, nearly 3,000 women and men with metastatic breast cancer have joined. This provides a very large group of patients who are willing to share their data and share their samples for research. The next thing that we do is send them an electronic consent form online, which gives us permission to analyze their medical records and any leftover tumor specimens that may be sitting in pathology departments that are not being used for clinical purposes. It also lets us send them a kit, through which they can provide us with saliva samples. Next, we obtain a portion of their tumor tissue — or, in some cases, a blood sample. We analyze the samples and extract information from their medical record. This allows us to create a database that has clinical, genetic and molecular information about patients with metastatic breast cancer. The goal is to put this database together and make it widely available for other researchers. By sharing their samples through this partnership, patients can help all researchers accelerate their work.

Q: Who is eligible to participate?

A: Anyone who has metastatic breast cancer is eligible to sign up and share their information. Right now, we are obtaining saliva samples, medical records and tissue samples from patients in the United States and Canada only. We have not yet tackled the regulatory issues that would allow us to cross other international borders.

Q: How can physicians help?

A: Physicians play an important role in this. The premise of the project is that we are going directly to the patients, and patients are being empowered to join. This is a patient-driven research project, but in many cases, patients will learn about the project and they will ask their oncologist about whether they should participate. We really want oncologists to know about this project, understand what we are trying to do and understand we are going to share all of the data widely with the research community. Physicians can help us by talking with patients, helping them understand what the project is and encouraging them to participate.

Q: What are your long-term goals?

A: First, we hope that — by building a large shared resource that has detailed clinical, patient-reported, genomic and molecular data — we are going to be able to accelerate research. We will be able to learn important things about metastatic breast cancer, identify new targets, understand resistance and hopefully identify better treatment strategies. Second, we are seeing a growing number of patients who are interested in participating in research, and this includes patients in community settings where they may not be able to go to a research center. By going directly to patients, and by using social media and going to advocacy groups, we have the potential to engage and empower patients to be a part of the research effort in a way that may not have been as possible with traditional approaches. This is likely to benefit the entire oncology community, because it means there is a stronger partnership between researchers, patients and physicians.

Q: Do you plan to add other patient populations to this project?

A: We think this is a proof-of-concept effort for how research studies may be conducted across many tumor types. We are getting ready to launch another project in angiosarcoma later this year, and in additional cancer types next year. If this serves as a model, it really may enable many different types of research that can be done by directly engaging patients.

Q: Is there anything else that you would like to mention ?

A: This has very clearly become a patient-driven project. The patients who participate in this project really take it upon themselves to reach out to other patients and promote the study and encourage others to participate. This approach — when we think about patients as partners in research, and we empower them to share information and samples that only they have access to — is really powerful. I have been impressed and amazed by how willing and eager patients are to participate in something like this. – by Jennifer Southall

For more information:

Nikhil Wagle, MD, can be reached at Dana-Farber Cancer Institute, 450 Brookline Ave., BP332A, Boston, MA 02215; email: nwagle@partners.org.

Disclosure: Wagle reports stock ownership in Foundation Medicine; research support from Genentech, Merck and Novartis; and a consultant role with Novartis.