According to the researchers from Dana-Farber Cancer Institute and the Broad Institute of MIT and Harvard, the crowd-sourcing strategy was aimed at accelerating research into metastatic breast cancer – and was able to successfully register more than 2,000 patients from every US state in the first seven months.
The undertaking, The Metastatic Breast Cancer Project (MBC Project), collected health records, tumor specimens, and saliva samples to provide researchers with an understanding of how tumors metastasize, at a genomic level.
"It's really fast," said Nikhil Wagle, MD, of the project. "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."
Corrie Painter, PhD, and associate director for the project, added "We have leveraged what already exists in online communities as breast cancer support groups.”
The project’s website specifically displays a “Count Me In” button that begins a patient’s enrollment process, after which they are asked about their cancer and treatments and are able to give researchers consent to access their medical records. Additionally, patients can opt in to receive a mailed collection kit to provide saliva samples, which are analyzed at the Broad Institute.
"With this approach, we hope to empower patients to directly participate in research, regardless of where they live, and contribute to the effort to improve outcomes for all people with advanced breast cancer," said Wagle.
And the approach has worked – currently, 95% of the 2,000-plus registered patients have provided information, and more than 1,100 have consented to have their medical records accessed and to have next-generation sequencing performed on their tumor and saliva samples.
In the future, the researchers plan on using a “liquid biopsy” test to collect tumor DNA that is shed by cancer into the blood stream. With this technique, tumor DNA could be analyzed over a period of time to give researchers insight into how a patient’s cancer evolves and develops resistance.
The researchers presented these findings at The American Society of Clinical Oncology's (ASCO) Annual Meeting which is being held June 3 to 7 in Chicago, IL. Additional data will be shared by Broad Institute and Dana Farber via a data-sharing platform that is currently under development.