Social media isn’t just a way to catch up with friends or post funny pictures, it’s now being used to recruit patients for a breakthrough cancer study. Over 2,000 patients from around the country registered to participate in a metastatic breast cancer study in its first seven months after reading about it through advocacy groups, social media and a dedicated website.

Researchers at Dana-Farber Cancer Institute and the Broad Institute of MIT and Harvard pioneered the Metastatic Breast Cancer Project (MBC Project) to understand how tumors metastasize and why some patients react different to treatment than others.

They are working to collect the patients’ health records, tumor specimen, saliva samples and tumor DNA, which can be obtained with a “liquid biopsy” blood test. The patients were given mail collection kits to provide saliva samples and then the researchers used it to compare with the tumor’s DNA.

To date, 95 percent of the patients have provided detailed information about their treatments and experiences and over 1,100 have allowed access to their health records and for sequencing to be performed on their tumor and saliva samples.

"It's really fast," said Dr. Nikhil Wagle, who is presenting the study at the annual meeting of the American Society of Clinical Oncology in Chicago, said in a statement. "The patients have already done much of the work, and they are excited to say 'count me in' and become partners with whom we can continuously provide feedback about our progress."

There are about 150,000 patients in the U.S. with metastatic breast cancer, but only a small amount of them are treated at cancer centers that analyze tumor samples. It’s historically difficult to recruit a large number of patients for studies like these, but social media made the process much easier.

One objective of the study is to analyze tumor and germline genomes of patients to find out why some have very good responses to drugs that haven’t benefited the majority of other patients with metastatic breast cancer.

The researchers speculate that the patients who respond to treatment may have mutations or other genetic changes that cause their cancer to be vulnerable to certain drugs. This may help physicians better identify patients who could benefit from similar treatments in the future.

The researchers are planning to share the data on a sharing platform that is currently under development. Other researchers around the world will be able to access the data and use it to conduct studies that might lead to more breakthroughs.

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