Count Me In! The Metastatic Prostate Cancer Project - Eliezer Van Allen

September 16, 2019

Eli Van Allen shares details on The Metastatic Prostate Cancer Project, a project part of a larger nationwide genomic research project called "Count Me In"  for men with advanced or metastatic prostate cancer. The Metastatic Prostate Cancer Project takes a new approach to cancer research in which researchers partner directly with men with metastatic and/or advanced prostate cancer, who share their samples and clinical information in order to speed up important discoveries. Count Me In, a nonprofit organization that brings together patients and researchers as partners to accelerate discoveries in cancer research. The goal of this project is to reach out to men with metastatic and/or advanced prostate cancer around the country in order to study their cancer using cutting-edge genomic and molecular research studies performed at the Broad Institute by allowing men to participate in these studies regardless of where they live.

The project seeks to generate the most comprehensive database that will be shared with the entire research community to accelerate discoveries. 


Eliezer Van Allen, MD Assistant Professor, Medicine, Harvard Medical School Assistant Professor, Medical Oncology, Dana-Farber Cancer Institute

Charles J. Ryan, MD, the President and Chief Executive Officer of The Prostate Cancer Foundation (PCF), the world’s leading philanthropic organization dedicated to funding life-saving prostate cancer research. Charles J. Ryan is an internationally recognized genitourinary (GU) oncologist with expertise in the biology and treatment of advanced prostate cancer. Dr. Ryan joined the PCF from the University of Minnesota, Minneapolis, where he served as Director of the Hematology, Oncology, and Transplantation Division in the Department of Medicine. He also served as Associate Director for Clinical Research in the Masonic Cancer Center and held the B.J. Kennedy Chair in Clinical Medical Oncology.

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Count Me In - Metastatic Prostate Cancer Project

Dr. Eli Van Allen on Twitter: @VanAllenLab

Read the Full Video Transcript

Chuck Ryan: Hi, this is Chuck Ryan from the University of Minnesota. I'm delighted to be joined by Doctor Elie Van Allen, a medical oncologist at Harvard Medical School and from the Broad Institute who's leading a really exciting initiative in the area of metastatic prostate cancer, that's seeking to gather genomic and genetic information from a broad population of prostate cancer patients. Elie, thank you for joining us and tell us about your project.

Elie Van Allen: Thanks for having me, Chuck. This is really exciting. Yeah, so it's a privilege to run this project called the Metastatic Prostate Cancer Project. It's actually part of a larger initiative called Count Me In. And the goal of this project is that, the sort of the way we usually do research in men with prostate cancer or really across cancers is that we expect patients to come to us at large academic medical centers like the one you work at, the one I work at. And as a result of that, we usually end up really studying a very small number of men, and we really can't capture the diversity of this disease and how it really happens in real life.

And so the idea behind the Metastatic Prostate Cancer Project is that rather than expect patients to come to us, we can actually bring the project to the patient and to their doorstep. Because a patient could simply go to, click the "count me in" button, answer a few simple questions, and then we will actually send you a saliva kit, a blood biopsy kit, get your permission to access your clinical information and generate what we hope will be the largest set of genomic and clinical data in advanced prostate cancer. And then critically share that information with the entire research community in as close to real-time as we can to break down a silo and hopefully advance and accelerate prostate cancer research for the benefit of everyone.

Chuck Ryan: So for the patients out there who are listening, what exactly, what exact information are you getting from the saliva and the specimens that they send to you?

Elie Van Allen: Great question. So the saliva actually gives us the chance to study what's called the inherited or germline genetics. In essence, the genes that you were born with. And that is actually increasingly important in advanced prostate cancer because we've learned over the last few years there are a number of men will have information in that genetic code that they were born with that may actually contribute to their prostate cancer. To add onto that, we also, whenever possible, try to do genetic testing of the tumor. And that can be done in a couple of ways. One way is actually doesn't involve any active work by the participant in the project. We will seek out whether there's any leftover material from a biopsy they may have had done and do genetic profiling, if we can, to look for genetic changes in the tumor.

But what's really neat about this project is we'll actually also ship out what's called liquid biopsy kits. So here we send you a special kit that you could bring to your next PSA draw or any kind of lab draw that you have and we'll request an additional sample of blood and that gets sent back to us. And we can actually use that blood to search for tumor DNA that has been shed into the blood and use that as a way to study the tumor genetics in real-time. And that actually is something that we've not typically been able to do up until recently. It is something that we can actually now scale-out and send to anyone who has access to a clinical lab anywhere. And also importantly, because we want to make sure that patients don't have any costs that they have to deal with for this sort of effort, is that if there's an issue with their individual lab, they can reach out to us and we'll send a voucher to a local lab, usually typically a Quest lab to get it done at no cost.

Chuck Ryan: And is this a one time and done kind of event where they send a specimen and that's all, or are patients going to be followed serially for specimens or clinical outcome?

Elie Van Allen: So the goal is actually to do all of the latter. So one, we will continue to follow clinically patients as we can both through getting their medical information, but we also have patient-reported data that the patients provide to us that we can actually get from them, really sort of as often as they feel like sharing. We don't want to be intrusive obviously. So it's really just as much as they want, as regularly as they want.

In addition, we're actually now just starting our first wave of sending second liquid biopsy kits to men who have already sent us the first one you took, let's say a month, some number of months ago or maybe a year ago, where we can now actually get a second sample and look to see how the tumors has changed. Whether there's been any evolution or whether there's been any resistance. And so the idea here is that conceivably we could do this quite often. Again, obviously we are very much leaning on the sort of generosity of the patients who are willing to contribute their data to research and don't want to make this a burden. But we can do this somewhat regularly.

Chuck Ryan: And will you make the results of the testing available to the patients in real-time or only after a certain number have been collected?

Elie Van Allen: So that's a great question. So one thing to be clear on this project is that as it currently exists, it is a research project, and so the genetic testing that we do is in a research lab and not a clinical lab. And so what that means is, is that we are not actually allowed to share individual information back to the patient about their own genetic information. Because you know, this is not done in a clinical-grade laboratory environment.

However, two things. One, and as fast as we can keep up with the data stream, we do share de-identified data across the entire cohort in ways that the entire community, whether they be patients, researchers, advocates, really anyone can access through the cBioPortal. And two, we have regular updates that we share for any participants where we not only update on sort of the status of the project but we also, as the project matures and we start to derive insights from these data, we can actually share that information with the group in real-time, and they can bring that information to their physician if they have questions.

Chuck Ryan: So for the clinicians out there who are listening, this is not something that's going to replace their currently available clinic, commercial germline testing kits that they may have in their clinics, and it's not going to replace the tumor sequencing that they may be doing through one of the other commercial vendors or through their own in house panel. Correct?

Elie Van Allen: Correct. So it won't replace that. Our goal, our sort of ambition is to actually make it such that we can actually return results. We obviously feel very uncomfortable for the clinicians. We don't, and I am a clinician and I sympathize with the stances, don't want to insert myself into the clinical care of thousands of people across the country. I will say though, on the flip side is that this is a patient-driven project. This doesn't actually require any work on the clinician's part. They don't have to fill out any information. They don't have to sign any forms. They don't have to do anything. So it doesn't actually add more work to any, to the clinicians and whom have patients participating.

Chuck Ryan: And then the third group would be the researchers like myself and others where we will be able to access the data for a patient who's considering enrolling in the program. Their data will be obviously de-identified and private, but the data of the group will be made publicly available. It's not just for your research benefit, it's for the research benefit of the entire community. I want to make that point.

Elie Van Allen: Correct. Yes. And that's a really critical point. We are very aggressively not making another data silo. This is not something that I'm sort of hoarding for my own research. And to that point, we launched this project a little over a year and a half ago and have been sort of aggressively recruiting patients and generating data. We had our first data release. So the first set of compiled genomic data and clinical data of the first roughly 20 or so patients that we made available in the cBioPortal for anyone to use, no questions asked.

One of the most amazing outcomes of this project, or my hope is, will be that as the data grows, because we're hoping, we're planning for our next data release probably sometime this fall, is that a researcher who does not, who I don't know, who does not engage with me directly, is able to use this data to help them and their research and that they use it and it becomes useful for them. And that would actually be the most amazing outcome.

Chuck Ryan: That would be great. And how are you going to account for racial diversity, ethnic diversity in this group of patients? Is there a lot of concern about, and I should say, a lot of study of the differential outcomes of patients based on race, economic factors, geographic factors, et cetera. In addition to doing things like talking to me right now, what tools do you have in your kit to ensure that there is a diverse population?

Elie Van Allen: That's a great question. So there's a few things that we try to do for this. So one, first is to recognize the problem. And I think we, I've done this kind of research in sort of traditional environments, and we recognize how frankly demoralizing, depressing it is that our data set is so skewed to one ancestral population, predominantly Caucasian prostate cancer of a certain socioeconomic status. And that's just unacceptable, because the project, sort of, in essence brings, we bring the project to the patient's doorstep. We send the stuff to their home. We can very quickly overcome the geographical challenges. And in fact, we produce these regular maps of where everyone is participating from. We've almost got all 50 States. I think we're still short on the Dakotas, but we've got the, I think we have the other 48, if I remember correctly off the top of my head.

Chuck Ryan: I might be able to help with the Dakotas.

Elie Van Allen: Oh great.

Chuck Ryan: It's right here in my back yard.

Elie Van Allen: Perfect. And even more so, we are getting, I believe, roughly 75% of the participants are coming to us being cared for in community oncology settings. So not quite an in our care, big academic medical centers. So this is precisely the patients that are generally ignored or not studiable in a traditional research program. So that's another thing.

The third thing is that we recognize especially there is a need to sort of grow the sort of the, grow the ancestral racial diversity of the datasets that we have. And we've been working very aggressively with multiple patient advocates and advocacy groups to try to share this project and make it as representative as we can be. Recognize that's still going to be a challenge. There's numerous factors at play in that regard. But so far we've been working closely with the various advocacy groups to try to overcome that. And that's frankly, that's essential tenet for not just the Metastatic Prostate Cancer Project. We're actually doing this across all of our Count Me In projects because we so clearly recognize how critical that is to actually inform and ask the questions that are needed to drive the field forward.

Chuck Ryan: Right. So for listeners who are not in the US, is this, can they participate in this or is this strictly a United States project?

Elie Van Allen: Right now we have regulatory approval for the United States and Canada. So it is an international project. Every country has its own set of regulation about exchanging any information about clinical care, genetic information and whatnot. And so we're kind of, we're still trying to feel out strategically how country by country are. So I think we also want to make sure that we have language that represents the countries we're going after so we can actually in essence convert our websites into other languages and the countries that correspond to them. So we're working on that now. But for now it's US and Canada.

Chuck Ryan: Great. And this is a project that's bigger than just prostate cancer, right? You have the Metastatic Prostate Cancer Project, which is within the broader Count Me In effort. And is this applying to a number of other cancers? Are other urologic cancers like kidney or bladder also similarly targeted?

Elie Van Allen: Great question. So the Metastatic Prostate Cancer Project is the third of the Count Me In patient-driven research projects. The first was the metastatic breast cancer project launched a few years ago. The second was in a rare cancer called angiosarcoma. And then ours is the third. Since then there's actually been multiple other projects launched, like gastroesophageal cancer project, a brain cancer project launched just in August of 2019. So just like, actually no, I mean in September, may have been earlier this week for all I recall, or earlier in September rather. And the goal is to actually sort of extend those out one by one and do this really across cancers. And indeed on that point sort of on the shortlist of trying to move things forward is also in kidney and bladder. Those being other diseases I personally am scientifically very interested in. So it's all on the list and the goal is to really extend this across everything.

Chuck Ryan: Well, this was really a great project. And congratulations on getting this going and thank you for all of your hard work and dedication to not only men with prostate cancer above all else, but also to the research community and people like me who hope to access this data someday and be involved in the conversation about the biology of this important problem and how we might be able to move forward and discover new things.

It's interesting. This reminds me a little bit of other large projects coming out of your institution, the Framingham study, the Harvard Physicians Health Study, and other types of broad population efforts that have really changed how we think of health and disease in this country and how we address numerous health problems. So congratulations. Thank you. And do you have any final words to say? If somebody's listening and they want to participate, where do they go? What's the website?

Elie Van Allen: Yeah. So yeah, thank you. Thanks for giving us a chance to talk about it. So it's Metastatic Prostate Cancer Project. And then you just go straight to the "count me in" button and go from there. And I'd say that we really mean it when we say this is a patient-driven research project. This is, every word of that website, every picture, every sort of graphic, every aspect of the project down to the design of the kits and the fact that they don't actually say prostate cancer on the box because we know some men are sensitive about that. Every detail is patient-driven and patient-designed. This isn't for my academic career. This isn't for folks at the Broad to sort of hoard data. This is really for patients by patients. And so, in so much as patients are willing to share their experiences doing this project with each other, that's actually the thing that's going to grow the project and make it sort of as what we hope will be as meaningful and large as some of the most, these famous sort of cohort studies like the Framingham group and whatnot that you described.

Chuck Ryan: Great. And for people who want to follow you on Twitter, you're available at @VanAllenlab and you're-

Elie Van Allen: Yes, please.

Chuck Ryan: ... a frequent presence and I follow you and enjoy doing so and hopefully, others can join and follow your work. Thank you once again, Elie.

Elie Van Allen: Thank you.