The Metastatic Prostate Cancer Project aims to gather genomic and phenotypic data from large numbers of men with prostate cancer, creating a database that scientists can use in their own research efforts. Any man with advanced disease who wants to participate may do so.

Every year, tens of thousands of men in the United States are diagnosed with prostate cancer, yet few end up participating in clinical trials, often because they don't meet the enrollment criteria or because they aren't treated at cancer centers where research is occurring. The recently launched Metastatic Prostate Cancer (MPC) Project, however, will compile data on any men with metastatic disease who want to participate.

“Our goal is to help generate a really large database that has clinical, genomic, molecular, and patient-reported data that we can make publicly available to all researchers, and really try to accelerate the development of new cancer treatments or treatment strategies,” explains Nikhil Wagle, MD. Wagle is a medical oncologist at Dana-Farber Cancer Institute (DCFI) in Boston, MA, and the director of an initiative at the Broad Institute of MIT and Harvard in Cambridge, MA, to launch patient-driven cancer research projects. The initiative previously launched the Metastatic Breast Cancer Project and the Angiosarcoma Project in collaboration with DCFI.

To sign up for the MPC Project, men complete a brief survey and a consent form at Researchers then send them an at-home saliva sampling kit and a liquid biopsy kit their doctors can use to collect blood, and obtain their medical records. Data will be continuously compiled and periodically released to the research community.

“The reason why we're doing all of this is so that we can try to explore questions in this disease that are very difficult to explore otherwise,” says Eliezer Van Allen, MD, of DCFI, who leads the project. The main scientific goal of the project, he says, is to “try to understand the molecular and phenotype relationships in advanced prostate cancer that we haven't been able to before,” such as drug response and resistance patterns, and trends in understudied populations.

For Van Allen and Wagle, however, their work is about more than the science: They would like to fundamentally transform how research is done.

“On some level, these projects are about flipping the whole system on its head, so rather than a top-down approach where research is developed by an individual investigator at an academic center, patients are driving the questions, driving science,” Van Allen explains, noting that the projects reduce barriers to participation in research.

“I think this idea of patient-driven research can really be applicable across the board, and I hope that this is going to bring about a paradigm shift that goes beyond just these specific projects,” Wagle says.

Adam Dicker, MD, PhD, of the Sidney Kimmel Medical College & Cancer Center at Thomas Jefferson University in Philadelphia, who is not involved in the projects, considers them “a great example of citizen science” and thinks they will be especially valuable for generating hypotheses that can be tested in clinical trials.

“Unfortunately, the overwhelming number of adults with cancer are not part of any study whatsoever, which is really a crime because it's all that data that we're losing,” he says. “The idea that Van Allen is going to create a data repository for patients and researchers is a major gift to the field.” –Catherine Caruso