The Metastatic Breast Cancer Project: Direct-to-Patient Research Initiative

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A nationwide project is enlisting patients with breast cancer to share their tumor samples and clinical information. Launched in October 2015, the Metastatic Breast Cancer (MBC) Project has enrolled more than 2,000 patients from all 50 states and is yielding information that will be shared with researchers, according to Nikhil Wagle, MD, who described it in a press briefing at the 2016 ASCO Annual Meeting.1 “Our goal is to understand the biology of metastatic breast cancer and find new treatment strategies,” said Dr. Wagle.

As we have been collecting clinical information and sequencing tumors and analyzing data, we have also seen an emerging social movement that emphasizes partnerships between researchers and patients…. We think this approach is paradigm-shifting.
— Nikhil Wagle, MD

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The MBC Project is led by the Broad Institute of Massachusetts Institute of Technology and Harvard University. Dr. Wagle is an associate member of the Broad Institute and a medical oncologist at Dana-Farber Cancer Institute, Boston.

With greater access to tumor samples comes greater understanding of the disease, and linking them to clinical information takes this research a step further, explained Dr. Wagle. “However, most tumor samples have not been available for these types of studies, largely because the vast majority of patients are treated in the community setting. In fact, most patients have never been asked if they would like to contribute a tissue sample or medical information for biomedical research,” he continued. “To address this, we launched a nationwide study to engage patients via social media and advocacy groups and to empower them to accelerate research by sharing their samples and clinical information.”

The MBC website ( invites patients with metastatic breast cancer to provide contact information and to complete a 16-question survey about their cancer and treatments. Respondents provide a saliva sample from an at-home collection kit, from which germline DNA is extracted. They also consent to releasing medical records and a portion of their stored tumor biopsy for whole-exome and transcriptome sequencing. The genomic information is analyzed in the context of their clinical data.

Results Thus Far

As of April 2016, there have been 1,730 patient-reported responses (98% response rate); 500 saliva kits have been returned, with saliva sequencing completed; and approximately 100 medical records have been received.

For these respondents, median age is 53 years (range, 24–91 years), 36% had metastatic disease at diagnosis, 35% were diagnosed before the age of 40, 81% have hormone receptor–positive tumors, 61% have HER2-positive disease, 11% have triple-negative disease, and 7% have inflammatory breast cancer. Strikingly, approximately 100 respondents reported living with metastatic disease for more than 10 years.

Learning More About Metastatic Breast Cancer

  • The Metastatic Breast Cancer Project is a direct-to-patient research initiative that invites patients to provide a saliva sample, tumor biopsy sample and clinical information.
  • The aim is to accelerate genomics research with the help of patients.
  • More than 2,000 patients from 50 states have enrolled thus far.

These patients are among almost 1,000 patients who report an “extraordinary response” to chemotherapy. For example, 117 reported long and/or extraordinary responses to capecitabine; 63, to platinums; and 36, to everolimus (Afinitor). More than 600 patients reported being on a treatment for more than 2 years.

“We see over and over again, this relatively small group with exceptional responses to traditional chemotherapy,” said Dr. Wagle. “There might be a genomic or biologic mechanism for that, and now, with the information patients are reporting, we can go after that.”

Dr. Wagle added another important observation from the MBC Project’s efforts. “As we have been collecting clinical information and sequencing tumors and analyzing data, we have also seen an emerging social movement that emphasizes partnerships between researchers and patients…. We think this approach is paradigm-shifting.” ■

Disclosure: Dr. Wagle owns stock in and is a consultant for Foundation Medicine. He also is a consultant for and receives research support from Novartis.


1. Wagle N, Painter C, Krevalin M, et al: The Metastatic Breast Cancer Project: A national direct-to-patient initiative to accelerate genomics research. 2016 ASCO Annual Meeting. Abstract LBA1519. Presented June 6, 2016.

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