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Crowd-sourcing is a new term, but the idea has been around forever. It means, basically, that everybody pitches in. It’s the idea behind an Amish barn-raising, or a bake sale, or Judy Garland and Mickey Rooney saying, “Let’s Put on a Show!” to raise money, or even a plain old potluck supper.

Crowd-sourcing is a powerful tool, and the Metastatic Prostate Cancer (MPC) Project may be the most worthwhile crowd-sourcing ever: curing metastatic prostate cancer, using the “de-identified” (no names or identifying information) medical data from those who are most interested in beating this disease: men who have it.

It’s e pluribus unum, “out of many, one,” in action: turning the scattered information from many men struggling with metastatic prostate cancer into one powerhouse bio-library that includes many things, depending on what patients are willing to share: genomic information from tissue, saliva, and blood samples, family history, PSA scores, blood samples, and more. And then, sharing that de-identified information with the entire research community. Not jealously hoarding it to safeguard a tiny corner of an academic fiefdom, using it as ammunition for a journal publication or as grounds for a promotion (that’s how scientific discovery typically works; see below). Instead, making it available to scientists worldwide.

The Prostate Cancer Foundation (PCF) has joined with Count Me In, a nonprofit organization dedicated to advancing “patient-partnered research,” which launched a similar project for metastatic breast cancer in 2015. So far, thousands of women and men with metastatic breast cancer in the U.S. and Canada have shared their anonymous medical information with researchers worldwide. Count Me In and the PCF hope to do the same for men with metastatic prostate cancer.

Count Me In is the brainchild of Emerson Collective, a California-based social change group; along with Eli Van Allen, a PCF-funded Investigator and medical oncologist; scientists from the Broad Institute, a nonprofit biomedical research arm of MIT and Harvard; the Biden Cancer Initiative, another nonprofit organization that builds on the federal government’s Cancer Moonshot; and the Dana-Farber Cancer Institute. The goal, says Count Me In’s director, Nikhil Wagle, M.D., a medical oncologist and cancer researcher at Dana-Farber Cancer Institute and the Broad Institute, is to bring about a cultural shift that “empowers patients, researchers, and clinicians to work in partnership and accelerate medical progress.”

How to Participate It’s simple, it’s optional, and it’s entirely up to you how much you want to participate. Go to mpcproject.org. Click on “Count Me In” in the upper right corner, and you will be taken through a brief survey. The questions, about your diagnosis, cancer treatment, history and experience, are all optional. Then, sign the online consent form to grant permission for the MPC project to request your medical records and send you a saliva kit. You can also opt to share your blood and/or tissue samples. Then sign the medical release form. “Anybody who has been diagnosed with advanced or metastatic prostate cancer can sign up,” says the MPC Project’s Elana Anastasio. “This is not a clinical trial or intervention study, so it doesn’t interfere with any other projects or clinical trials that you might be participating in; it just asks for information that already exists.”

The MPC Project, like the breast cancer project, is taking the impetus for cancer research from the ivory tower to the grass roots: “Men with prostate cancer uniquely have the power not only to join research efforts, but actually lead the way to discover new cures,” says Van Allen, who is on the faculty at Harvard and the Dana-Farber Cancer Institute, and an associate member of the Broad Institute. Van Allen’s research focuses on computational cancer genomics (applying new technologies and algorithms to precision cancer medicine), on immuno-oncology, and the study of drug-resistant cancer.

“We are thrilled to see a PCF Young Investigator and Challenge Award winner leading this effort to democratize genomics research,” says medical oncologist and molecular biologist Jonathan Simons, M.D., CEO of the PCF. “PCF is proud to advocate for Eli Van Allen, Nikhil Wagle, the scientists working on the MPC Project and the men who are sharing their own data to help us find the cure.”

What can be learned from many men with metastatic prostate cancer? Big data shines a big spotlight: It allows scientists to analyze thousands of bits of information from hundreds or thousands of patients, all at once, and to detect patterns that may not be evident in smaller studies. For example: why do some men respond well to immunotherapy? Why are some men exceptional responders to androgen deprivation therapy (ADT) plus abiraterone? Why don’t all men respond so well? What’s different about their particular form of cancer? Are there genetic targets for treatment that we haven’t even thought of, because we haven’t noticed them – because, in effect, we can’t see the forest for the trees?

The First Data Set

The Metastatic Prostate Cancer Project (MPCproject.org) started in January 2018. So far, more than 650 men have enrolled, giving permission to MPC’s scientists to use their data. Now that the PCF has joined as an advocacy partner, we hope that many more men will find out about this project and want to be a part of it.

In February 2019, the MPC project released its first data set – information from 19 patients. It is “the first of many data releases to the entire research community,” says Elana Anastasio, the MPC’s Partnership and Outreach Manager. “Every day, more patient samples, patient-reported survey data, and clinical information from medical records are being collected to be analyzed and shared widely, so scientists can access it and learn from it.”

This is harder than it sounds, Anastasio explains. Once men sign up and give permission to release their medical records and tissue samples, the team has to request those records, read through each one, and determine what samples are available; then, if men have opted to share tissue samples, “we have to wait for those to come, and sometimes we have to take a piece of the tissue and send the rest back.” It takes time to do that for each man, she continues. “With the normal timeline of research, it’s pretty astounding to get the data out the door this quickly. Most projects take years, and researchers typically are only releasing the tip of the iceberg of the data they’re generating. Our aim is to get it out so more researchers can add it to their own data sets – so everybody can use it – and then we expect further data releases,” from higher numbers of men, every six months. “We’re not ‘siloing’ any data.”

No Silos Here

The use of “silo” as a verb is common in the competitive academic arena, where scientists not only must “publish or perish” to compete for grant funding, but publish before they get scooped by some other researcher. “The academic system doesn’t really encourage people to share their data,” Anastasio notes. “We’re very lucky because the MPC project is supported outside the normal grant structure. Our only mission is to generate this data and share it widely. We don’t have to hold off until we publish a paper.”

Most – about 85 percent – men with advanced or metastatic prostate cancer receive their care in a local hospital, not a big academic medical center. “But anywhere in the U.S. and Canada, wherever you’re being treated, you can be a part of this,” Anastasio says. “You can take the information from your tumor samples that are just sitting unused in a pathology lab, and combine them with samples from many other men to generate this rich database of information.”

Information that, everyone hopes, will lead to a cure for metastatic prostate cancer.

How to Participate It’s simple, it’s optional, and it’s entirely up to you how much you want to participate. Go to mpcproject.org. Click on “Count Me In” in the upper right corner, and you will be taken through a brief survey. The questions, about your diagnosis, cancer treatment, history and experience, are all optional. Then, sign the online consent form to grant permission for the MPC project to request your medical records and send you a saliva kit. You can also opt to share your blood and/or tissue samples. Then sign the medical release form. “Anybody who has been diagnosed with advanced or metastatic prostate cancer can sign up,” says the MPC Project’s Elana Anastasio. “This is not a clinical trial or intervention study, so it doesn’t interfere with any other projects or clinical trials that you might be participating in; it just asks for information that already exists.”
Janet Farrar Worthington
Janet Farrar Worthington is an award-winning science writer and has written and edited numerous health publications and contributed to several other medical books. In addition to writing on medicine, Janet also writes about her family, her former life on a farm in Virginia, her desire to own more chickens, and whichever dog is eyeing the dinner dish.