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Corrie Painter, Count Me In, Partnering with patients to accelerate the pace of cancer research

Corrie Painter
Deputy Director в Broad Institute of MIT and Harvard
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29 июля 2020, Онлайн, USA
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Count Me In, Partnering with patients to accelerate the pace of cancer research

Corrie Painter, PhD (Broad Institute)

9:00 AM - 9:55 AM EDT on Wednesday, 29 July

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Moderators: Sean Davis, Matthew McCall, Erica Feick

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Corrie Painter
Deputy Director в Broad Institute of MIT and Harvard
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I'm Sean Davis. It's my pleasure to introduce our speaker this morning. After she, and I met about a year-and-a-half ago in a session that was built around the idea and benefit from and come and don't benefit from getting access to you and having control over their own data. And Cory has been a real leader. Thinking about how data and patience and research are really answer so much more detail than that. Corey, some associate director for the county and project. She's a research. Scientist that found

the brooch and she's a trained cancer. Researcher with a PhD in Biochemistry and she's actually done. Around that time she was diagnosed with a rare form of cancer called Andrew sarcoma. She's combined her cancer advocacy scientific background, and community-building to engage with patients in order to build and carry out. Patient partnered genomic studies and it's also a very active and sis. The co-founder of the address to promote awareness, Incorporated,

to all of you today. And I'd like to thank each and everyone of you for your attendance and I hope you're all well and healthy. And well during these times as best as possible so you can Sean give a very generous introduction and I'm going to expand on some of the things that he talked about in terms of setting the stage for why. I'm so interested in this notion of data sharing and partnering with Patience. I kind of feel like I have to provide some context, with

my personal story around all of this. And so, it's going to be pretty personal, and it's going to, you know, weave in and out of science. + might my own cancer Journey throughout this talk. So, as you think of questions, please know that I'm a very open person and happy to answer anything. Whether it's about my own personal experiences advocacy, the work we're doing at the Byrd Institute or Beyond, So you know I was diagnosed just over ten years ago with this cancer that Sean had mentioned called angiosarcoma as a grad student at UMass Medical

School getting a PhD in Biochemistry and had a lump in my breast and just it was something that the last thing I would have thought it was that this was going to be an exceedingly rare and aggressive cancer that I had a very poor prognosis. But after a challenging for months, that consisted of several biopsies and surgeries and diagnosis and misdiagnoses, I was told I have angiosarcoma, which is a cancer that starts in the inner lining of your blood vessel the end of the illegal sells, you can think of your blood vessels as a who's and the very end aligning of that, who is our end of

cereal sells. So you can imagine that Your blood supply can feed. The cats are very readily when it is the actual lining of his blood vessels. That is doubling the component here. So, this is a picture of my husband and I, he in solidarity had shaved his head. He looks like a cancer patient and I'm waiting for a scan, but this picture really represents what the first several years of this was like, in my kids were 2. And for that, I'm actually looking over the top of my computer right now at my now, 15 year old and amazement that we've come this far,

When I was diagnosed, I was already a scientist and so I understood how to look through the literature. First thing that I did was go to PubMed and what I found were. These just retrospective studies at had very low numbers, they were trying to draw statistics from 14, people that may have been treated at a single institution over the course of 60 years. You know, there were single case that he's talking about one, patient's clinical experience with the disease. In one of the papers is actually entitled. You no evidence of long-term survivorship in Andrews or coma patient that

lasted an entire year. And, you know, this is the very disheartening when you're the scientist reading. This is not what you want to see at all. And so I decided I was not going to be able to, to learn anything scientifically about this, but that, maybe I can find practical experiences that would help me. Maybe, there are other people who had gone through this who were also looking to connect. And we can form some type of nucleus of understanding and share experiences and learn from each other. So I went to Google and I would type in angiosarcoma cancer and sure enough they were

people, they were also looking and I find them and I'd reach out to them, but they not one person responded. And after sometime it occurred to me that maybe maybe they're not alive anymore. I take your name and I Google searched it and lo and behold their obituaries would pop up every single time and again. You know it was just the time of Despair as you can imagine. So I waited Facebook and this is 10 years ago so it wasn't quite the same social media platform that it is today, but it was still very robust and it was a place where people were connecting

with each other and in a last-ditch effort to find anybody. I typed in Andrew, sarcoma, cancer there, and lo and behold, there was a group started by this woman, Lauren Ryan with about 10 people in it and I instantly connected with these people. I'm a level League of friendship and a kinship that I had never experienced before these people understood every single thing I was facing and they were they were stay-at-home mothers. They were artists one with a cop, you know, they were just a spectrum of people living their lives who got slammed by this diagnosis just like I did and they were just

trying to connect with each other to share things that they thought might be useful. And they were they were so useful and do I knew it wouldn't leave his scientific Insight. It led to a kind of a life raft in the middle of a hurricane. Lauren who founded that group. And I learned as a stay-at-home mom decided that we were going to launch our own nonprofit together. So we, we co-founded angiosarcoma awareness. And the the purpose of this was to fund research Labs that were engaged in in vascular biology, if not, angiosarcoma directly do because it's so rare

almost nobody was studying it, we came up with her own mechanism because I'm a scientist. I could read understand what each of the labs could offer, and then maybe kind of Heather different Labs that would never otherwise find a find each other through a funding mechanism. So instead of trying to go to a normal RFA, somebody writes hypothesis-driven instead of experiments that they want to do to me and then we get funding, it was almost turned on its head where we would look for different lab that had the capability of doing specific types, of research. And then other people that may have

resources, not available to the other lab and talk to booth in and have them cool. Design a grant together and then fund booth and we tried to do this in a way that would maximize the ability for data-sharing integration and collaboration. And at the same time we are also engaged in peer-to-peer advocacy and trying to mix a b k shins in the space. These efforts led to over three-quarters of a million dollars within four years funding a bunch of different Labs with that notion of really trying to open source the information that they generated. So if if they were successful in

generating a xenograft Mouse model make it available to people if they've generated a dataset open-source it so other people could use it and leverage it for their own knowledge base and that that was the hope when I was going through this So in order to push that advocacy forward, I haven't graduated yet. This all went down two weeks before I was supposed to defend my thesis and fact there was a chair with my name on it at commencement. I was not in it. So I wasn't sure that time if I was going to live and if I was going to live for how

long and I just need to make my pee at the time, I graduate student P. I said to me that you would be happy to keep me on for ever as a graduate student knowing that, that forever was probably 6 months until I was no longer going to be alive. So he was very generous with keeping me on throughout the duration of this disease. And I, I felt no pressure to, to actually defend that thesis until I was not getting responses from scientist when I would reach out to them and Corey that the kids are patient. So, it was a very risky move, but I decided decided to defend my thesis and it was

risky because I had to go off of my student loan Cross Blue Shield insurance, which Top of the line and go on to pustak insurance, which was bottom of the barrel, but it was worth the risk to try and push the advocacy forward inside offended that thesis in June of 2010 or 2011. Lo and behold a year later, I was still alive and it was remarkable to still be alive and I thought to myself, well, maybe I do have some time here on this Earth and maybe I can do more with whatever time I have left. So I went ahead and received a route for Grant received funding to do a fellowship

in cancer, Immunology setting melanoma, and their studies went really well. And I had the opportunity in front of me to be my own, you know, pi to be to have my own lab or to push the Forefront of advocacy forward. There is a faculty position offered to me for tenure track, but at the same time, if I did that, I would have had to step down from my role as an advocate. And I thought to myself, you know what, what I can do with my own lab pales in comparison to what I might be able to do, by inspiring many, many loves to work together at once. So I decided not to take

any faculty position instead, look for just kind of a normal. Normal job that would allow me the time where I can I can do both where I could be a scientist during the day and do all of the advocacy at 9 on the weekends. At the same time, the Byrd Institute had posted a job position for the associate director of operations in scientific Outreach in their cancer program. And when I read that description, it was as though somebody looked into my life and need a job based on my crazy experiences, they were looking for somebody who understood what it was like to be a

cancer patient, who understood the world of advocacy and who were the, you know, phd-level cancer research scientist and they wanted this person to conceive of a new infrastructure that would indeed with cancer patients in order to generate. Massive scale, genomic data and other types of data in order to open source it. And I thought, my goodness, this is this is nothing has ever been this aligned in my life and so I jumped at the opportunity. And what it look like from the perspective of the folks at The Brood were leading these efforts. So, this was kicked off early from

The Brood leadership and led by nikhil wagle who's now, the director of Count Me In, which is the suite of projects. I'm about to talk about in the notion was this, that there are so many challenges with studying patient, tumor samples that exist right now in our in our country and in the world. And probably among those is the fact that 85% of cancer patients are treated in community settings, I'm one of them, right? I was my tumor was biopsy at my local medical school, which actually has a cancer program, but they don't study angiosarcoma or sarcomas at all. And so my biopsy went

into a ball of wax that was used to make my my very first misdiagnose and then it's out on the shelf and it didn't, it was not leverage to understand this disease at all. And that's the that's the same kind, of course that most of our tumor samples throughout the country, take their use for the day. Knossos. And that's the end of the line for them as well, you know, and in addition our experiences, you know what I can talk about from the vantage point of being a patient is not incorporated into the fold, how we conduct research at all the most patients to receivables and their data just

haven't been readily available for studying but we live in an era now where we have technology and social media and there's been cultural changes that enable us to really think about partnering with patients in a way that was never possible before. Now I'm going to date myself with how old I am, I'm not 20, like I looked, I'm I'm in my mid-forties and when I was growing up he didn't talk about cancer and when they did, they talked about it in hushed tones. But now it's it's, it's kind of become part of the national dialogue. And it's not as stigmatized in certain populations as it

used to be. And I am, and that's a very thick underscore in certain populations because there are still so many Issues that we've from the research side, have to confront, if we're going to destigmatize this across all all patient populations, but suffice it to say, we are in a place. Now where we can, at least begin this process of talking and working directly with cancer patients. The hope is that we can generate a massive publicly available database of clinical genomic, molecular and patient reported data and cancer to enable researchers to find

patterns in the data and to accelerate discoveries in the development of new treatment strategies, that's the hope. How do you do that. One is talked to lots and lots of patients directly impacted by the disease. You're trying to study if you want to partner with them. It's not necessarily the first go to that research scientist Halley, talk to the end of you from the user of whatever it is that you're trying to do. But when you're trying to partner with patients, it's really important to talk with them in the lead up and build of the study that you you want to engage with

them in. And in this case we were going to watch our project and metastatic breast cancer. So doctor was late working at the Dana-Farber, Cancer Institute as a medical oncologist, new several Patient Advocates and we started our conversations there, where we ask them, what, what should we name the project? What should it look like? Should there be a picture of somebody with the disease? What kind of language should we use? When we are asking the most basic questions of these Advocates, to get a sense for, where do we even start? And we took the information that they gave us and we Then

brought it into Twitter where we asked more medicine, breast cancer patients to help us build this project and they did you know we had dozens of patients that worked on every single part of this project they helped us realize it's you know first of all, first of all, we should not try to build a community that there are already communities that exist and rather, we should be creating something like a website or an app that can be brought into the communities that already kind of cropped up, organically, and that we should use the word metastatic breast cancer in the title of the

project, that it would be a learning experience just by virtue of the name itself. They asked us to make the burden of participation as low as possible, so that they were not, you know, put under undue stress trying to help into the helped us both message. This, they helped the imagery that we used and then he helped us develop and design the operations on the backend for like, what what does the patient do if they want to join in? What does our study? Talk to you. After a patient has joined. And with their help. We launched this in October of 2015 in today over 5,700,

women and men from across the country. And Canada have said, Count Me In. I want I want to be part of this and I want to leave my legacy in order to make sure that other people don't have to go through what I'm going through right now. Going to talk a little bit about what enrollment has look like over time and it's, it's been really phenomenal. We have launched in 2015 and when we launched, we engage with, about six different, Grassroots organizations that all had patient reached into the metastatic breast cancer world. We really wanted this narrow focus

of people who had touched in order to help us refine the message and connected deeply with the community. So we launched in the launch of basically, like now the website is available, but we've launched with the messaging that was also promoted by advocacy partners and lo and behold you know having no idea what this would look like. We had a was 800 people join in that first month and it was it was remarkable. We were, you know, we we honestly have no idea what you expect with a hundred people, join with a thousand people join. So, having 800 people within one month, doing any study is it's

it's pretty remarkable in terms of the amount of the morning that Do. So, when it started to Taylor off, you know, tour the holidays, we were, you know, our opinion of it was that this is really good and maybe we captured everybody who's going to be involved with this. And if that's the case, we're still going to learn so much. And so, we were super grateful for the people that had joined and we were ready to start generating that data. But then something remarkable happened. We, we presented at a conference call. The San Antonio breast cancer conference in 2015, and we got a bump in

enrollment. And then about a month later, we saw this really large Spike, were a couple hundred people joined within 24 hours, and we were able to find out that this was entirely due to one patient who learned about the project. And she was a trusted kind of Cornerstone figure Within Temptation Park Community, and she posted about this project. And many of her followers, hundreds of her followers, decided to join, and then they started to share about it until you see this. City state enrollment overtime with the stochastic jobs that are really brought about by either press or

prominent patient that said you know talking about this in social media. But most of this is word-of-mouth from one station to another in their Facebook posts are in their Twitter feeds, in really kind of driving our ability to reach patient forward. The date. We have over 2,000 medical records. That we received from patients. We have 586 tumors from 425 patients, we've completed whole-exome sequencing on over a hundred of the tumor saliva matched Pairs and we have almost a thousand blood biopsies in house. So when a patient joins and if they provide consent that enables

us to get a portion of their Ark Bible tissue that same tissue that I had taken out of my tumor in that, just sat on a shelf. We can get that now from patients, who give us their consent? And we need to look at the DNA mutations in that relative to that patient's, normal DNA. So we ask for saliva and in some cases we also can get blood samples which can provide that normal DNA from the white blood cells, but also may contain bits and pieces of shredded DNA from inside the tumor that we can actually sequence through whole exome sequencing. The same way we could from that person's actual

tumor. And so it can give The glimpse of the mutations that are arising in tumors throughout of metastatic patient, just by virtue of taking a blood draw, which is really remarkable. This is a glimpse of what this looks like in in social media everybody in in these posts. Except for this woman here, who is a phlebotomist in this woman here he's a nurse is a metastatic breast cancer patient. And again men get this disease to. So you can see our friend Bob over here in the top left, going through treatment, and sharing a picture of his kid. These people are sharing their saliva or

blood kids and they're smiling. These are terminally ill. Patients, three of whom we've already passed away. That were smiling at the point of, you know, being able to participate in this research project and they were smiling for their own reasons. And they were sharing those reasons in social media, encouraging other people to join them, you know, just in, and they use their own experiences, may use their own language, and I think it makes it just so much more authentic to have it in organic movement, being led by patients, rather than research scientist going and trying to like a crew.

Through the normal traditional mechanisms and it's What's led to that steady state enrollment over time. One of the other benefits of doing a decentralized study, where anybody can sign up just on their cell phones. Are their tablets are there? Computers is, we can, we can engage with patients who are scattered all over the place to me. Not live anywhere near and major academic institution. That is studying their disease and can see here in this graph. We have over patients that are being treated at over 1,700 institution and we see some of the very large institutions that have on

dozens of patients, but there are over 1,200 institutions across the country that have one patient. That's participating, I can't imagine a mechanism where you be able to build a Consortium from like a top-down project. This type of response can only be initiated. If patients are directly involved and using their consent in their will to drive this research forward. So we want to take all of the data that we're Gathering and generating and Stitch it all together. So, it's linked in order to generate that open Clicquot genomic, database that I had talked about in the beginning and so far

we've been able to generate data and release it into cbioportal, Jeanette, in the genomic data. Commons. We also want to release it into other research portals on. This is right now, actually not fire Cloud. That's that's an old Fighting me to update at the Byrd Institute. We want to generate patient and researcher specific portals. And I think I I really want the folks in this particular conference to really think about what is what made the date of look like for no company competition, biologist, what can we do? What can we develop? That would massively leverage this data in order to

share it as broadly as possible. And if you have ideas, I would love to hear from you. So find me at painter at Broad Institute. Org and share them with me. I would love to I would love to hear your thoughts. The right now, if you, if you go to see bioportal and you look for them at a set of breast cancer projects, or she just go to our project website which is MDC project.org. And you click on data you can access this on cbioportal. This is Alden D identified and it's only the somatic whole-exome sequencing that were releasing here. So we can do this without password

protection, anybody can download it. It's been stripped of all readily, identifiable information and Sheridan aggregate. So you can, you know, take a look at the data and there's it's got a very robust clinical field. If you do go to see if I owe portal and take a look at this, make sure you go to add chart and click on that downward icon, and you'll see about 80 different clinical charts, that pop up. And what that enables you to do, is it enables you to filter on the data to build whatever cohorts you want in order to understand the associated genomics that go along with it. And or in

the inverse Find the genes of interest in c r that you know, doesn't associate with young people or hurt you, positive cancer or sites of metastasis to the Bone and in these ways you can generate hypotheses in or augment your own understanding from the research that you're doing in this disease. So we weren't sure. Again, when we release the data, would it be used? And sure enough within the first 6 months over 5,500, download from sabado for Dover Police and to date. Now over there's over 20, Publications that are stating this data into my point. You know, originally about,

should I be my own Pi? Or should I try to inspire other people to do research? Which one will have more impact. I, I can say, in fact, now, the ladder, you know, there's no way one within a couple of years of sharing data would have 20 Publications and more coming every day. And so I feel like, you know, fruit for those metrics for the amount of interest in patients Deletion the fact that poops are generating Publications that are in pure review and making discoveries. And sharing those more broadly, that this, these are metrics of success for this whole way of conducting research.

I'd like to share a couple of very short videos so you can hear directly from patients what they think of the project and what they think of the data, the first person. And I'm going to introduce you to his death Caldwell best. She was there from the beginning. Help us build this study though. She looks great in this video. We knew she was very sick and she died a couple of weeks after making this video. There is a tremendous sense of urgency to get her feedback on the data before we release it. So we we reach out to her first and then engage with 40 different participants within the project

to go through what the data. It looks like inside cbioportal to make it as patient-friendly as possible before we released it. And I had to say, you know, no matter how long I've been engaged in this research and and do I wear the patient hat? I'm always wrong. You know, with my assumptions of how people are going to react to different elements of the project and it's really helped my feet to the fire with respect to making sure we always do due diligence by asking people. Their opinions and not hosting our own beliefs in our own assumptions, on to them when we made this data, I I had my own

particular set of thoughts with respect to how patients would interact with this was never on my radar but Beth is going to tell you something that we heard time and time again during those 40 patient walkthroughs and I'll let her speak for herself. That's really cool. So much information, and the CIA. You're so alone and then spray like that's the sister. Experiencing things together. So I never thought somebody would look at and do you know, making clinical data and see themselves and see the humanity behind it. But this is this is this is something that so many patients articulated that when

they saw it and they realize that they were contributing to this that they believe they can see their living Legacy. I'm going to introduce another patient who is still a staunch advocate for the project her name is Kelly, Shanahan. And I want to also just talked about this notion of engaging patients at every possible place when Nick and I in the rest of the team, which has grown substantially since we launched present at national conferences or even small conferences, we always going to call out and social media is sometimes through an email to the entire cohort, letting people

know where we're going to be, what we're going to be talking about and to encourage folks to come join us in the presentation. And so at this was, I believe a Tasco, a couple of years ago in Kelly who is a, a doctor, she's an MD who had to step away from her practice. Practice is in OBGYN after Her diagnosis with metastatic breast cancer, joined us. And so, Nick and I were presenting and Kelly was right there with us shoulder-to-shoulder. Presenting this to the, to the rest of the clinical and scientific Community a Tasco. I want you to take note in the difference

if you've ever been to a after presentation or poster Hall, I want to ask if you've ever heard somebody talk, so passionately about a research project is Kelly does One of the things that I am most excited about in my life that station and asked us, what we want, how we can help, you know, what you signed up and road, I am on the California, Nevada border. So, just like I was saying before, you know, that Kelly is treated in a community setting, but she said she wants to be able to drive research forward. I

mean, if you're going to have an awful disease, that's going to take your life away, many people watching, like throw dagger at it on. And, you know, if, if they can and while they still can and it's exceedingly frustrating to feel like you are powerless, not only over the course of the disease to help other people. And so, being able to participate in a project, like this has really empowered a lot of people to have ownership over the future of this disease. If not the clinical course, it's going to take for them personally really good about the direction

of metastatic breast cancer project and the question became, can we do this and other cancers? Or is it something you need to the medicine? I take breast cancer world is it's a relatively, you know, common cancer compared to many in. Although it's much more rare in the med Aesthetics. It is, it's got a lot of advocacy support within the community and many vocal patient amplifiers, so, but if it's this kind of platform could be leveraged for something that has none of those things and still work that maybe this could be widely applicable to auction. So, we turned our

attention to angiosarcoma, which is my cancer, which has the poorest prognosis of of soft tissue sarcomas. It only has about 300 people a year diagnosed, and as you can see it on, this is a kaplan-meier curve, will you have Survival on the y-axis? So you can see all of the people are alive at the beginning of this, but over time and on the x-axis, we have months, you can see each one of these notches is a person dying from this disease and it's got a very steep drop-off over the first two years as a scientist is actually the very first grab that I saw where it was one

major academic institutions, 40-year retrospective analysis and it was I actually got vertigo looking down that steep curve because you don't, you know, they're not for ever in your favor. When you're looking at something that over the long run has less than a 20% survivability rate. We now have a cancer. It's exceedingly rare. Not a lot of people used to not allow people get it. You have a better chance of getting hit by lightning, so because there's so few of us, we are not treated at the same. Institution were scattered all over the place. So even if somebody wanted to study us, we'd have

to all go to the same place which is highly unlikely that we we have actually generated something like that. We can talk about later for one doctor as a result of our advocacy, but suffice it to say and most exceedingly rare cancer, we are scattered and because it has such a high mortality rate. Not there's not a long line of long-term survivors. So we wanted to point the study tour, the schedule to see if this would work. Luckily, for us, we had the medicine breast cancer project in order 2.2, in order to save, this is what it looks like. Would you and this community

which consists of about one Facebook group that Lauren started many, many years ago, would you help us build one of these for our cancer? And so patients within our own disease, disease Community reshaped, the imagery, the words fit to speak to our patient community and we launched this in 2017 and I have to say, there are two things that really took me by surprise, when was the reception by the sarcoma physician Community, which suggests they've just wrapped her arms around this. The second we launched, you know, there are people, I know if he'd lied, don't know that

took to Twitter to let everybody else know that this is happening, one of them, is that a doctor george Demitri? Who is the head of sarcoma at Hartford, who happens to be my personal doctor and now a scientific collaborator and co-author? But at the time was just my doctor and he, he took My favorite quote of all time. Tell your friends, friends, friends and friends of friends, friends friends, don't let friends. Angiosarcoma still unsteady for progress, and this is just a sense for how much does community, really embraced the study and help him tell their patients about

it and has led to what is now that, you know, another very successful instance of patient management, genomics research. The last thing I kind of was expecting in and just was so moved. By was the response from the mess that has breast cancer Community. Here's Kelly and Beth again and Twitter. And in another patient who is not necessarily related to the project is deeply is Kelly and Beth but still staunch advocate for it. Asking their people in their networks have become aware of this project and rather than seeing it is kind of a Computing project or taking the

light off of the medicine. I take breast cancer projects which was still and still to this day. Moving full steam ahead, they saw it as they were rightfully should they saw themselves as kind of the very end of the people that we're going to open the door to this whole new world of research? And as a result, there going to be able to help them their own Community, but also they're going to be able to help this other community. That would otherwise have no resources available to themselves and their very nature pride in that as they should. And that just led to get another line of

the interconnectedness between, you know, our projects in the patient that were helping to drive this So today, do you know it's about two and a half years since our launch and for this cancer that only gets 300 people a year, we've had over five hundred women and men with Andrew sarcoma join and then to count me. And I want to be part of this and it's not just people with the disease. We also have a separate portal with over a hundred and fifty people who have filled out, surveys on behalf of somebody that they knew who passed away from the disease. So this is a, you

know, a representation of where folks live in Orange or patience and in in blue Open Circles, our loved ones, that provided information, that's been key to our understanding of this disease is clustering. But this is actually a perfect representation of the population of the United States and its more representative of the fact that wherever there are people, you're going to get us up like some proportion of them that get each of these different cancers. So much like the misguided breast cancer projects, we were able to release data from this project and you know, this is this is

more updated. But when our first day to release only had 19 patients and we saw this one graph down here that you don't need to be a scientist. In order to understand something is not right there and back to ask my children to take a look and say what's different here and eat in both of them pointed out. The fact that you have a group of people over here but then you have a whole other group of people over here and they're different, something's different about them. What we're looking at right here is is, is called to rotational burden, and it what it is, is it counts individual,

mutations in the Torah, DNA relative to what your normal DNA has and why this is so important is that within the last few years? There is evidence to suggest that people with Cancers that have high to rotational burdens may actually have good responses to type of therapy called checked when it hit in his checkpoint inhibitors. Some of these have cured exam capabilities. So when we saw this, we were absolutely thrilled and we wanted to learn more about that cobra two patients. You can just go in to see if I owe portal and you can put a box around with these people are in

it. Returns their categories are there clinical categories, so all that one of these patients had head neck face and scalp cutaneous angiosarcoma, and it's, so it's basically the skin of sun exposed areas and because of this being the case, it was Sun expose it, let us to get all the hypothesis that may be what was going on here with that, there was some damage similar to what you see melanoma. But instead of happening in a molana saying, it happened in an end of Belial sell. But the cause of the cancer is basically the same as melanoma. So, he should Jane the computational

biologist. He's part of our team and part of Nick while glaze Lab at the Dana-Farber, ran as signature analysis of all of the samples of the What is seeing yellow, which also on that on the y-axis here, as you increase its higher to rotational Burdon and the colors are coded for different signatures that you can actually see and read out of the DNA. All of these people that had hi to rotational burden. Also showed a UV light signature with in there too or DNA and everybody with an asterisk, your head head next day scalp angiosarcoma. So this data suggests that

Andrew sarcoma. Two teenagers are, it's caused by the Sun and may have a response to immunotherapy if it's acting similar to melanoma. So what we thought next was, if that's the case and because this is a decentralized study with people treated in the community. What if and medical records of some of these patients? We can find people whose doctors used a compassionate care approach to to giving them a checkpoint inhibitor. Because it's, it's widely prescribed now because in a lot of different cancers in any Community setting, where, you know, doctors are so in

need of kind of the next thing you're going to do to try to provide a better clinical course for their patient that they're really trying different things. So we look at the entire cohort of patients to see, has anybody been treated with checkpoint Inhibitors? And if so, what kind of response do they have low? And behold we found six people three of them were over here. You know, they were within categories that were where they're entering sarcomas started internally again, and it says, wherever you have blood vessels is where this tumor can start. So we found people that had it start,

you know, an internal organ or somewhere. That's not son exposed, and that did not have a TV signature. And those three people went to, to win on protocol and none of them had a response to immunotherapy. I want a caveat this with the fact that I do personally know, and anecdotal, you know, one story where there is a person with an internally arising. Angiosarcoma, that had a different marker called pdl1 and they had a very robust signal of that. And they had an extra, your response at me to therapy to. So just because they don't have a high UV signature. Does not necessarily

mean, they're not going to respond. But in this situation, the three people that we had, in our cohort, didn't respond to, you know, with their internally arising Andrew sarcomas. There were three people that had head neck and face. Angiosarcoma is one of them with their very first dose, of checkpoint, inhibitor had a, an extreme reaction and had to be taken off. And so they You know, we were not able to see what happened to them, as a result of taking it. But then, there were two people that had metastatic, angiosarcoma, that Rose from this cutaneous tumor, and I'm going

to show you the course of just one of them. But both had a very similar story. This one patient was on a clinical trial, and it didn't work. They had for aggression, they want in a different clinical trial and it didn't work. They had progression, they went on a tire stand kinase inhibitor clubs open in and it didn't work, and they had progression and then their doctor use pembrolizumab, which is a checkpoint inhibitor. And they had an amazing and complete response, meaning their tumors all went away. And then after a long time on this drug, which the drug itself, kind of takes the brakes

off of your immune system, so that your own immune system can react and kill the tree. But, you know, it can also lead to some autoimmune disorders as well and that happened with this patient. They had to be taken off. But spite the fact that they were metastatic even Are they were taken off of this treatment they remained without evidence of disease. And this has been updated to 2020. So, it's been several years and they've had no recurrence of this cancer in their medical record. Their healthcare provider route, this after the first cycle pembrolizumab, this person had a dramatic reduction

in the size and mass in the neck and retro or area. This is just amazing. And when you read this from, you know, about the perspective of our science or were trying to aggravate these stories and in, in really understand what's going on. This is exactly what we're looking for these individual needles in the haystack of responses that are happening all over the place. That would just be sealed away in a day to receive on a shelf or sealed away in somebody's medical record. Regardless of how incredible that response was can come to life now and can inform the entire Community

because we can now share this freely The second we saw this data, we were giving talks with in the store, community and so in advance if you've been publishing this just making the data available and investigators from across the country, were able to look at the data for themselves and use it to try and develop clinical trials. And sedate. There are at least three clinical trials that are enrolling. Angiosarcoma patients to checkpoint, inhibitor studies to text is clinically I want to go ahead and just highlight one quick piece of discovery that we also need which is in a

particular protein, called pik3ca. This protein also has tremendous amount of mutations and breast cancers. And in our cohort we found the there were mutations only in breast. Angiosarcoma is like mine. And so we have a situation here, where we need discoveries in the genie has cool board and we're also making discoveries in the breast cohort that are unique to Patient involvement in the build of the study. This these series of mutations aggregate around, where we know the breast cancer mutations the canonical mutations are. And if you look at the way that these

mutations kind of arise you can you can see that the dirt is similarity and how they may function relative to the mutations found in breast cancer. And so, this is another point where there may be there to be clinical implications were building Google trials, run breast, angiosarcoma is that use pi3 kinase inhibitors? We're able to aggregate all of this data and publish it. And nature medicine this year, and the response from the community was amazing, and I don't have time to read. All the responses that I'll just read this one, simple one miracles do happen.

As a result of the success of these projects, we were able to launch several additional projects in this map represents patients that either have you know the answers are, or metastatic breast cancer but also metastatic prostate cancer stomach and esophageal cancer, brain cancer, all comers, brain cancer, and more recently osteosarcoma, I want to highlight the osteosarcoma which is our most recent launched recently launched project and mostly just show you how different it looks. You know, we build these projects with the patient communities and in this case we built it with children and

the children wanted this didn't like the Silhouettes. They didn't like how weird it was. Didn't like the fact that there were new videos to explain what was going on. So we radically changed everything and pointed it toward their population and in what they thought would resonate, and you can see Dylan here on smiling on her homepage with a video. Describing, what's going on? I went to learn more button for those who really wanted to get more to the details of the project. We always encourage people to come, visit us, and to engage at every opportunity. So, here are people from within the

osteosarcoma Community, their parents or children are two key investigators, who leading the kitty jinhui, Brian Compton were there and we just all interacted with each other in a way that that helped us each understand each other's perspectives better. This led to revamp also and how we show what participation looks like and the project so far has been successful with of over a hundred people joining within the first couple of weeks of launching. This is my one of my last slides. I just want to show what it looks like to have people from different projects, sharing their, their

selfies and social media encouraging other people to to join with these testimonials and I'll just read this this one. It's so impactful to me personally it it has never lost an ounce of meeting over the years that I've been doing this. I want to live and watch my children grow up, but if I can't, I want to leave a legacy and it cure Always chokes me up and, you know, just for a point of levity. I just also want to point out that, you know, sociologist can also study this, you know, that they can also take part in this and I'd love their take on why it is that all the women have

taken selfies, but all the men have had pictures taken of them with their boxes. I'm not going to draw any conclusions, but it will leave that for you. Similac slide is that you know, the take homes are to go to the patient's, you know, tap into the existing communities. Don't necessarily try to start your own. You have to be inclusive and think, actively about diversity. Before you launch work with patients before. And during, and after the study, you don't build something and then invite people in after the fact and take feedback seriously and show it. And then be authentic, you know,

try and engage with people within the community as often as you possibly can. This is our team led by Nick and it has grown since this. And there are just countless people who have been part of this over the years in and I can't thank each one of them enough. And with that, I'll stop and I will take questions. Well, thanks. Cory for what is always a truly inspirational? And thought-provoking kind of approach to science and advocacy. We do have some questions.

This is a question that I'm very happy to see that hoping that this might happen to talk, right? Question, right now is how could competition biologist inbound from additions on this conference and Community contribute? I am so grateful to be presenting at this particular conference. For that exact reason we we need people, we need computational biologist and help us across the spectrum of generating the data to making use of the data. So like I said, right now, you can go the easiest way to take out. I think each other back. Let's start with where where to

begin. And so I think to begin we would love for people to take a look at the data that's in the public domain. And you know, it helped us conceive of the best ways to use it. So we have date of release now in metastatic breast, cancer, angiosarcoma and metastatic prostate cancer, you can find that data in C bio portal.org or you can go to her master website at Count Me In. Org and click on the individual projects. Each project will have a data Tab and those data tabs will tell you all of it. Like it is post all the methods for how we generated the

data, as well as links to where that data is living. So once they step one is, if you could go and take a look at what we have in the in the public domain and even just provide feedback, each project has its own info at MDC, project.org info at ASU project.org in all of us are steady staff. Would love to get feedback from you, is to just, what do you think, and where were the gas? And what would be a good platform for us to who's this data? We like we want to be able to host it in research specific portal. So are there other places we could

house the data? And if we did, what are ways that would maximize the accessibility, another way that I can Envision is partnering up with people. Look at the post office level or in Labs were there are no company. The biologists I'm in order to help them understand that what they can do with this data. And so really thinking about the utility of it and then helping us. Think through how do we do Outreach to people where we could match people with computational chops and two labs and investigators who may be more clinical? So that do you know, the coupling of those can lead to Greater

understanding of these diseases. So, step one, take a look at what we have step to contact us through our project websites in, and let us know what you think I'd love to get like a working group together of computational biologist who are willing to like, think about what we do with the data that's in the public domain. So thank you so much for asking that. I just mentioned that the water lab has a particular project called to see if I report all data that leverages the Sea by a portal, the entire Sea by 42, and Dominic's bridge between that and a conductor. So

I'm getting started with this kind of thing. With sealer, bioportal data is very straightforward, academic medical centers have a tendency to under rock and roll on minority populations among study subjects. To an area is reached by count me and allowed to do better. That is liat. You're going to do that. I could talk to you questions. I would hope would be asked of Italy. I really whoever ask that question who ever go to that up? I want to thank each and everyone of you this is something. I am passionately committed to because we do skew young

and we do skew white do our studies. Despite the fact that we have reach into basically anybody who has access to the internet. In our projects that he says things very much that we have a lot of work to do at the, you know, research side of this building trust within communities that have been abused by the medical and research Industries for, you know, hundreds of years. You know, we haven't an entire team. Something within the Count, Me In infrastructure, that is focused on community outreach and engagement with it like face. Be beat Beast engagement

engagement with them, people in the community to include barber shop, barber shops and salons engagement, with young people at historically, black universities hbcus in order to try to reach, you know, younger. Populations of people that may be willing to work with us in order to augment this message and more. So in order for us to gain trust within communities. So that not only our project will improve in terms of representation and diversity, but other research initiatives can flourish as We're never going to get there. If we don't really act

together in a computed way to try and make this accessible to people who are in underrepresented communities. And not just these projects that science and you know more generally we absolutely have to do better and you know we if you have ideas beyond what what I said in this very short answer. Again please reach out to us because we have an active sub within our within our projects that are. That's their focus everyday is. How do we reach out to underrepresented communities? And how do we build trust? So, I would love to hear your thoughts and ideas. I like to hear time for probably one more

question. So I'm going to use the moderator is discretion and jump down the list a little bit. Can you speak a little bit about how you navigate the balance between the need for patient privacy and the imperative to share data from research tonight. I might add to that how you incorporate a patient's wishes in in, how you build things? Absolutely. It's it's a really bizarre, such excellent questions. So, you know, it's the step one. Again from our perspective is talk, talk to patients, talk to as many patients as you can, and then don't ever stop

talking with me. Since it's never done being built, you always have to re-engage, you always have to re-engage new people, the whole ecosystem changes with time and you have to make sure you're still doing right by people, across the Spectrum from privacy concerns to maximizing their desire to share. So, what we do, we have to be, we have to be conservative with respect to me. I'm sure we are protecting people's individual level data. You know what, rich just imperative to make sure that, you know what, that we protect, as much as we can the ability to keep people and not. So we have a

couple different tiers that where we can release the data and Misty Bayou portal datasets those are all somatic calls, so calls, so we're not releasing the raw. Underlined genomic data that can be used to fingerprint individuals and we take away all of the HIPAA identifiers. And so, and we take measures that would been categories rather than specify, you know, a date of birth or even a year of birth. So, instead of saying that the person was born in 1948 and developed metastatic cancer, you know, you know, at this year we will start at the point when they were diagnosed with

breast cancer and move everything relative to that. So you don't actually know when they were diagnosed nor really, you know, how old they are now. What is saying that they're 40:8? They'll be in a bin from 45 to 50. And so with these different measures aggregating the data we stripped the identifiers away and also try and you know Ben categories to make it as Anonymous as possible without taking away the ability to to delve in and understand what's going on in a group of 45 to 50 that may have. You know, it may have been 10 years since they were diagnosed. You just don't

know when their birthday is or you no other individual level information and then when when you get to the genomic data Commons which has it has a DAC, it's more protected. That's where investigators. Can you download the wrong underlines, you know, mix 10 din Ki chatni that along with the other information we have in the public domain. All right, well it's been a pleasure for those who are online. Thanks so much for attending. Thank you, Corey for a fantastic. Remind your friends that this is recorded and it's worth of you, Cory's an amazing person that

has some amazing projects and has really changed the way research is being done. So thank you so much, take care of it.

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