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Breast Cancer Awareness Month: Crowdsourcing Data, Not Dollars

October 5, 2016

Pink Ribbon for Breast Cancer

October is Breast Cancer Awareness Month, a time when millions of advocates don the color pink and strive to raise money to combat the disease. But, despite the long-running success of fundraising initiatives such as Relay for Life, the study of metastatic breast cancer (MBC) – or cancer that has spread to the bones, brain, lungs, or other organs distant from the breast – is allocated less than 10 percent of combined government and nonprofit funds in the United States (US). Next Thursday, October 13, is Metastatic Breast Cancer Awareness Day, named by the US House and Senate in 2009, in order to drive awareness, fundraising, and research to this form of the condition. An innovative new crowdsourcing initiative that began one year ago this month is doing just that, but instead of raising dollars, it is collecting data in the form of patient samples and information.

Learn More About Human Biospecimens

The Metastatic Breast Cancer Project (Project) is enabling MBC patients to contribute meaningfully to research studies that could help treat the next generation of survivors. Run by scientists at Harvard, the Dana-Farber Cancer Institute, and the Massachusetts Institute of Technology’s Broad Institute, the goal of the Project is simple: Gather as much data from as large a population of MBC patients as possible.

By collecting thousands of valuable samples and patient information, including unique genetic and molecular data, researchers are hopeful that they can distill important insights related to MBC and its variations. For example, tissue samples could help inform how tumors progress differently in discrete individuals, why certain patients live longer than peers with the same prognosis, and further, what drugs might be useful for stopping the metastatic process.

Patients who wish to participate simply sign up online, complete and mail their sample via a saliva kit, and then consent to allow the use of their tissue samples and medical records. This streamlined specimen donation process effectively removes any geographic research barriers, such as the need to travel to academic centers, and allows sick patients to donate from their homes and beds if necessary.

Since the Project’s inception it has enrolled over 2,600 patients, many of whom say they feel empowered by the ability to directly advance medical breakthroughs. As the Project further develops, discoveries will be posted online and with the National Cancer Institute’s genomic data program – making this information available to other scientists working to unravel the metastatic process.

As we’ve detailed previously, it is this philanthropic attitude and amalgamation of patients, samples, and information that will spur the next phases of medical research. For MBC patients, this crowdsourcing approach is a novel and promising way of collecting like-minded individuals in search of new treatments or, one can hope, a cure.

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