In just seven months, the Metastatic Breast Cancer Project has collected clinical and genetic data from more than 2,000 patients who learned about this effort from social media and volunteered to participate. The project could become a model for other cancer types where recruiting sufficient patients for clinical trials through traditional channels is often a challenge.
For clinical trial investigators, enrolling enough patients to generate sufficiently powered findings—and doing so in a reasonable amount of time—poses a significant challenge. In some cases, trials close due to the inability to accrue even a few dozen participants.
Yet in the last 7 months, due largely to word of mouth, advocacy groups, and social media, more than 2,000 volunteers in the United States and Canada have signed on to the Metastatic Breast Cancer Project (www.mbcproject.org), sponsored by Dana-Farber Cancer Institute (DFCI) in Boston, MA, and the Broad Institute of Harvard and MIT in Cambridge, MA.
The project's investigators, led by Nikhil Wagle, MD, a medical oncologist at DFCI, aim to create a repository of mineable data to speed breast cancer genomics research, better understand drug resistance, and provide leads for the development of new therapies. To that end, trial participants, all of whom have metastatic disease, agreed to share their medical records with investigators, provide saliva samples for the extraction of germline DNA, and make their tumor tissue available for next-generation sequencing.
Roughly 85% of patients with breast cancer are treated in community settings, where their tissue samples are collected only for initial diagnosis, then stored and not routinely made available for research, Wagle said. Until now, “no one has asked if they'd be willing to share [their samples] with researchers for discovery.”
Joanne Mortimer, MD, director of the women's cancers program at City of Hope Comprehensive Cancer Center in Duarte, CA, who is not involved in the project, described it as “brilliant.” Patients want to contribute their data so they can better understand their own disease and help others, she said. “Nobody wants to feel like they've died in vain.”
To date, most of the project's participants are white women, Wagle said. He has started additional outreach efforts with advocacy groups to diversify the patient cohort.
“We should be able to reach lots of different people who haven't been studied using traditional approaches,” he said. Gathering data from patients of different racial and ethnic backgrounds will help fill gaps in knowledge, such as why black women with breast cancer have poorer outcomes than whites.
The power of such patient-driven research, Wagle said, is that it pools data and identifies “rare” patients'for instance, those who carry an uncommon mutation, are younger than typical patients, or have an exceptional response to a particular therapy. These data, which can be challenging for scientists at any one institution to obtain, will be shared (identifying information removed) with the NIH and the broader cancer research community.
“I think that Dr. Wagle has really established a paradigm that we can apply across other cancer types,” said Sumanta Kumar Pal, MD, co-director of the kidney cancer program at City of Hope. “He should be commended for developing a platform that allows for very rapid collection of data.” –Karen Weintraub
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