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I n May 2010, Corrie Painter received shocking news: She had angiosarcoma, an extremely rare cancer that forms in blood vessels and lymph vessels. Painter, who by that point had a Ph.D. in biochemistry from the University of Massachusetts Medical School, searched the scientific literature for answers. What she found was a vacuum — very little data and research into her aggressive and often-fatal cancer, primary angiosarcoma of the breast.

In the decade since, Painter underwent surgery to remove her diseased cells and has remained clear of cancer. And she has made it her mission to expedite the pace of discovery for angiosarcoma and other rare cancers. She is associate director of operations and scientific outreach for the Cancer Program of MIT and Harvard’s Broad Institute. Through that role, she is in charge of the Angiosarcoma Project and is deputy director of Count Me In, both of which aim to make patient data (tumor samples, medical records, and more) readily available for researchers interested in decoding rare cancers.

That pool of precious data has not only bridged some of the chasm Painter encountered in 2010, but has led to scientific discovery.

While the project used to include studies on just six cancers — metastatic breast cancer, angiosarcoma, metastatic prostate cancer, esophageal and stomach cancer, osteosarcoma, and brain tumors — it recently expanded to include all cancers.

STAT recently spoke with Painter via Zoom. Here is a condensed version of that conversation, edited for clarity and brevity.

It’s been over a decade since you were diagnosed with angiosarcoma. How have you seen the scientific landscape shift in that time?

I think it has, to some extent, but I think it’s because of the work that we’re doing at the Broad, to be honest. I think the data that we generated helped to usher in a new understanding of the disease and that led to clinical trials that may not necessarily have happened in the time frame that they did, which has been practice-changing for some people with angiosarcoma. We didn’t help design clinical trials or anything like that. We just release data and scientists and clinicians can use that data.

How has your own understanding of orphan diseases and angiosarcoma evolved in the last 11 years?

I went from never hearing about it before to being a published author, describing the genetic underpinnings of angiosarcoma, so pretty vastly.

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Can you tell me about your patient-facing work through Count Me In?

We basically work with patients in order to build studies that will hopefully lead to them signing up and providing consent so that we can obtain their tumor tissues and their survey information and their clinical medical records so that we can generate data and just give that away to people for free.

What is the value proposition for someone to donate their samples and tissues and medical records?

Most people are hoping to be altruistic. A lot of people that we deal with have terminal disease and they don’t want to see other people have to go down the same path that they’re on. A lot of people, when they’re diagnosed with cancer, will do anything they can to try to help support research. And you see this by the numerous charities that pop up in people’s names or the people that raise money on behalf of others for cancer research. They don’t want to see other people suffer. And so they go to great lengths, and this is a way to kind of accelerate the process and let people directly donate their tissues, instead of money or other ways, to help support the research infrastructure.

How exactly does this project work?

Patients can come online and provide consent that enables us to get copies of their medical records, send them a saliva collection kit, as well as a blood collection kit, and also access portions of their leftover tumor samples or their archival tumor samples. … It’s crowdsourcing as much information across cancers and within cancers as possible so that we can give enough data to any type of investigator who’s interested in the clinical history or the genomics of any particular type of cancer, give them enough so that they can make discoveries.

Is that lack of data one of the main obstacles to breakthrough research in this field?

One of the main issues, at least with adult cancers, is that the vast majority of people are treated in a community setting, meaning a clinic or a hospital that doesn’t necessarily do deep cancer research. Their tissues are taken out of their body and then they’re used for diagnosis. But then, after their diagnosis, tissues usually sit in a ball of wax on the shelf of a pathology office, and they’re not actually leveraged for discovery or research. And so that’s a problem because we don’t have access. And so that’s what we’re trying to solve for, is really kind of liberating the information and data that’s siloed away so that everybody can learn.

Why was data collection the point of the process you wanted to get involved in?

I was diagnosed with a very rare cancer and saw firsthand just how many barriers there were for me to try and do any type of research or inspire or fund research in my rare cancer. It was just one of those things where everything is pointed toward studying more common cancers, and even those cancers don’t have great therapies available to them. And so there’s just so much work that needs to be done that was highlighted through this prism of rare cancers, but really, that light is equally as dim for all cancers.

And what is needed is data, and a lot of it, and good, high-quality data. The way that our research infrastructure is set up, it’s not set up so that the maximum [number] of people can make the maximum amount of discoveries. We have academic investigators, that they have a hypothesis, they will form a study, they will publish the tip of the iceberg of their findings, and then the rest of that data is theirs and it’s not necessarily available for other people, though that has been changing over the last five or 10 years. Journals are kind of requiring source data, there’s been pressure from funding agencies to release data, and it’s kind of slowly moving that barge, but it’s just still not common-day that people will generate data and, untethered to a publication, just make that freely available for people.

What disincentivizes that release of information?

The infrastructure simply does not exist. Like [if] I was a postdoc, I’m in a lab, I do an experiment, I get my results, I get ready to publish a paper, I publish my paper, and then that’s it. That’s just the way the system is set up. It’s not that I necessarily want to hoard them or hold them, though I will say there is no incentive for scientists to share. They don’t get tenure faster for sharing. They don’t get an increase in their salary for sharing. They end up potentially being vulnerable by showing data that they could publish on and getting scooped by other scientists, which they would be disincentivized for those reasons. But really, all things being equal, there is no actual place for me, as a postdoc, to put all of my data that I could share with people.

With rare cancers, why is it that just a bit of data can be so helpful?

If you do cast your net and start sequencing those areas where there’s just not a lot of data and not a lot of knowledge, you’re going to make discoveries much quicker than you will in more common cancers where there’s already been a lot of sequencing and a lot of research and a lot of data. You have to do a lot more in those more common cancers to find the needles that are still left in that haystack, versus the rare cancers, where nobody’s even bothered to notice there was a haystack at all.

As a patient, what was it like to realize that this was the landscape you were thrown into?

It was devastating. When I was diagnosed, the first thing I did was I looked at the scientific literature. And when I saw there was almost nothing known about my cancer, it led to an existential crisis. I understood the way science was funded, I was a scientist — I got it. And I immediately was like, wow, not only am I going to die from this, but everybody who will ever get this disease is going to die the same horrible, miserable death as me because there’s never going to be any kind of large-scale funding or large-scale effort in something so rare. There’s no way it could exist. And so being able to come to the Broad [Institute], and work with Count Me In and build the angiosarcoma project and showcase what you can do very rapidly in a rare cancer, I think has really ignited people’s desire to do more in the space.

You have the unique perspective of having been through this and knowing, in some way, what patients are enduring. How do you maintain your sensitivity to that and not let it become just data work?

After I hang up with you, I’m going to field an email about a young 24-year-old that has angiosarcoma, and talk with her dad. These are conversations that I have several times a week, with a parent or a child or somebody’s sibling or just any number of people that find me and reach out to me. … I end up talking to people several times a week, and hearing their trembling voices and their fear and sadness. It’s enough to make it never be about data, no matter how deep in the weeds I am in a spreadsheet or managing somebody else who is in that spreadsheet.

So on the flip side, how do you take care of yourself when that’s your reality?

It’s really difficult. It’s like being in a constant sprint — not even a marathon — for 11 years now, and it’s not easy. I have developed extraordinarily deep and intense hobbies, and that’s how I cope. And I’m a mom. I’ve got my kids and they’re super awesome. … And so I’m very busy. I always had to stay 100% busy, 24/7. I had to have activities racked up for if I woke up in the middle of the night and couldn’t go back to sleep. And so this has led to some kind of overboard hobbies, like I’m an avid gardener and I’ll raise basically all of the produce for my family for six months out of the year. I’ve got a greenhouse. My favorite activity that I will leave all other activities for is hunting for gourmet mushrooms, edible wild mushrooms. And so it keeps me busy in the woods. Any time from the spring until the first freeze, I can go out into the woods and find these gourmet mushrooms and my family is obsessed. It’s a lot of fun. You’re just so focused on all of those things, there’s not enough time to think about the 8-year-old dying child that you just Skyped with the day before.

What else is on your mind?

The thing I’m hyper-focused on is just getting word out to people that anybody who’s ever been diagnosed with any cancer in the United States or Canada can join. And they can do so just by going to JoinCountMeIn.org. And the more rare cancer patients that sign up, the happier I will be.

Patients are so often just kind of like an afterthought. In everybody’s collective effort to cure disease, there’s not like any one aspect of research or trials or anything that I’ve seen that puts the patient in the middle of the equation and says, ‘What is every single thing we can do to keep this person alive?’ As a society, we’re not there. We’re just not there. And so everybody has a little piece of the puzzle that they’re working on and they’re deeply committed to and they’re passionate about, but it’s not stitched together in a way that makes a whole lot of sense. There’s no universal incentives that kind of pull the whole system along.

What is your favorite part of this work?

Trying to add layers of meaning to the awful experiences that cancer patients go through by enabling them to provide a legacy to help other people. Watching folks get their saliva kits or their blood kits and post about it in social media with a smile on their face, even though they’re getting an infusion, even though they’re sometimes weeks away from death, just knowing that they’re able to actually help other people in a very meaningful way, I think that, for me, is the most compelling part of what I do.

Sharon Begley-STAT Science Reporting Fellow

Isabella is the inaugural recipient of the Sharon Begley-STAT Science Reporting Fellowship.

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By Adam Feuerstein and Damian Garde

Reporting from the frontiers of health and medicine