Full Transcript Podcast Introduction and Guests 0:06 Welcome to the Doctors Making a Difference podcast, where we help physicians to be empowered with the tools they need to successful in medicine, 0:13 in finance, and in life. 0:15 Join us as we highlight doctors and other professionals around the world who are making a difference. 0:27 I've been looking forward to today's episode for a while. 0:30 I'm very excited to welcome Dr. 0:32 Scott Okuno and the president of the SARC, which is named Stephen Young. 0:39 The SARCs mission is to connect individuals and organizations from around the world committed to discovering, developing, 0:44 and delivering the latest and most promising treatments for sarcoma. 0:47 As a sarcoma patient, this means everything to me. 0:51 SARC stands for Sarcomal Alliance and Research Collaboration. 0:55 And I'm very excited to welcome both the president of the organization and the chief medical officer. 1:00 I think you'll find this episode very instructive and useful, and I hope you're as excited about it as I am. 1:06 I am delighted today to have two guests. 1:08 This is exciting. 1:09 Usually we just have one guest on the podcast. 1:11 Today we're going to highlight a wonderful organization called SARC, which stands for the SARCOMA Alliance for Research and Collaboration. 1:21 Is that correct? 1:21 Have I got that right? 1:23 So, correct. 1:24 Wonderful. 1:25 We have Dr. 1:26 Okuno, who is the Chief Medical Officer for SARC, and we have Stephen Young, the CEO of SARCs. 1:33 Why don't we start with you, Dr Okono. 1:35 Would you mind introducing yourself in detail to our audience and how you got started in SARc? 1:41 Thanks for the invitation, Dr. 1:42 Crane. 1:43 It's a great privilege to be on your podcast. 1:46 And from my role, I am a sarcoma medical oncologist. 1:50 I practice at Mayo Clinic, Rochester. 2:01 So I support the organization at SARC to make sure from the medical standpoint that we are doing things appropriately.
Dr. Okuno and Stephen Young Introductions 2:09 I am also what we would say the Medical Monitor or the Medial Officer, and I oversee the clinical trials that have. 2:17 When I got involved with SARCs very early on, when it started, there was a big need for us to have a group of researchers collaborators that were interested 2:31 in sarcoma research and we pulled together and started SARC and Stephen will tell you a little bit more about the organization but it was a small group 2:41 of people that initially started Mayo Clinic was part of that group and then over time I had the opportunity to become more and more involved with SARCs 2:50 and eventually became medical monitor officer and now chief medical officer. 2:56 Thank you. 2:57 Steven Young is the CEO of Sark and a similar question. 3:02 Stephen, tell us your journey. 3:04 How did you get involved with SARK and what was the vision when you first started and, what is your vision now as you've been into it for a while? 3:12 Again, I echo Scott for thanking you for hosting us. 3:15 This is a great opportunity to spread the awareness of who and what SARK is because our mission is to help rare and ultra rare cancers for patients that 3:23 are impacted by this. 3:24 I joined SARC about five and a half years ago. 3:27 It was recruited in to step into the rather big shoes of my predecessor who was part of the founding group of leading and directing this organization. 3:36 My background is as a non-scientist is facilitating and establishing collaborative research consortiums in cell tumors and blood cancers. 3:46 And so my role here at SARC is primarily to run the organization to be the facilitator, enabler, catalyst to allow doctors to collaborate within academia 3:57 and also critically, we also bring the patient, and we'll talk about this more later, I imagine. 4:01 We also ensure that the patient's voice are included in our study designs, et cetera. 4:07 So what SARC does is handle a lot of the business aspects, and I'm in charge of that. 4:11 Dr. 4:11 Okuno and our chief scientific officer respectively are responsible for setting our scientific mission along with our various committees and clinical mission 4:21 and to oversee our clinical trials. 4:22 And SARCs is the operational sponsor of these trials. 4:26 So think of us as the word catalyst. 4:28 We catalyze, we allow scientists and clinicians collaborate more effectively. 4:33 And it's my job to make sure Sark does the best you can in that space. 4:37 Well, like I said at the beginning, I'm actually really excited to have both of you on the podcast. 4:41 I learned about Sark just earlier this year, had a diagnosis of solitary fibrous tumor about three years ago, at I guess at end of 2022, beginning of 2023. 4:51 And at beginning that journey, it's just so overwhelming because it is a rare cancer, most sarcomas are rare. 4:58 And it's hard to find really detailed information. 5:01 And at some point in the dark hours of the night when you're worrying, you wonder, is anybody even researching this? 5:06 How far can this go? 5:07 Is there anybody that actually knows about such a rare cancer? 5:11 And so to found out about other researchers has been really wonderful. 5:15 To find out that there's a whole alliance that's organized around rare sarcoma research and designing clinical trials and making sure that we actually 5:23 put the pieces together and connect all the dots was really exciting. 5:27 I was so excited to find that. 5:29 So I wanted to ask you, Dr.
SARCu2019s Mission and Role in Sarcoma Research 5:30 Okuno, as you've gotten involved in this, and you're a medical oncologist, you have this experience, a broad variety of cancer knowledge. 5:39 As you got involved with SARC, what do you see specifically as the role of SARCs as opposed to other organizations that are in the space? 5:48 Yeah, that's a great question because part of the evolution of SART has been to use and leverage the local expertise of major sarcoma centers. 6:02 Our job is to say, if you are doing solitary fibrosis research, how do you connect and collaborate? 6:09 If you're interested in a clinical trial that crosses multiple institutions, How do you do that? 6:16 That's where CIRG steps in. 6:18 So our job is not necessarily to set the agenda of all the cancer centers out there and doing their circular research. 6:27 We love this decentralized approach to say it's, you guys do the research, You do these activities. 6:34 Well, we are there to help, as Stephen said, to be a catalyst to connect researchers. 6:41 and to hopefully develop clinical trials based on that research. 6:47 And SFT is one of the more rarer types of this, but we have done multiple studies where we are able to get world's experts together to design and develop 6:59 critical trials from their institutions, and also work and collaborate with industry. 7:04 Industry is very important with what we do in Asia is because they have resources and expertise as well. 7:12 And that we help guide them into the diagnosis of sarcoma, where the big institutions that do the research. 7:19 So we're as the catalyst. 7:21 Part of our job is not to own all that space, but to allow people to thrive and develop and collaborate. 7:28 That's what our name C stands for in the collaboration in SARC. 7:32 No, that's really good. 7:33 And like I said, I was just so excited to find that earlier this year that there is an organization that puts money behind it and puts information behind. 7:41 One of the things that we all know is that when you pay attention to something, it tends to get a little bit better. 7:47 When you measure it, It gets better and sometimes it can feel like several disparate organizations that are doing work, but don't necessarily have big 7:56 funding or they don' availability of just trying to get all this information together. 8:00 So I love that, like you said, you coordinate with industry. 8:03 You coordinate. 8:04 With different institutions, not by telling them what to do, but by being able to collaborate and facilitate this research. 8:11 And it's so the mission is really noble and it, it broad cause. 8:14 There are, I think you told me over 70 different types of sarcoma that you address and it is quite a few different diagnoses. 8:21 They share some similar features. 8:23 It's really kind of a broad mission, but it's an important piece of the puzzle that I suppose was missing before SARC started. 8:29 When you first got involved, what was the problem that SARCs set out to solve or what the missing piece that, you saw SARc as filling? 8:38 I'll highlight it and then we'll have Stephen tell the history of how, what we're still trying to solve right now. 8:45 Back when CERC was there, there was a big reorganization of what would say the cooperative groups. 8:52 This is the National Cancer Institute or the NIH. 8:56 And at that time we probably had 11 different cancer organizations doing multiple clinical trials, but no one was focused just on Cercoma. 9:07 And during that re-award, we wanted to make sure that sarcoma expertise of running clinical trials, designing clinical trial was done by sarcoma experts. 9:20 That was not available 20 plus years ago. 9:25 And we said we need an organization to help coordinate and focus on sarcoma research developed by sarcoma researchers, developing from real expertise and 9:40 those that actually manage saricoma. 9:41 So that's how the loose-knit affiliation went. 9:46 We realized fairly quickly that each institution brings a lot to the table. 9:52 However, if you bring four or five different institutions together, you can really design trials better. 9:58 You can do a resourced commons core group better, and then you can answer questions quicker because you're hitting circled centers that have the volume 10:09 of patients that can actually execute on the design of the trial. 10:13 And we're very fortunate that all of our trials have approved very well. 10:17 We published on every single one. 10:19 Bigger cooperative groups, when you do these trials, they linger on because there's not enough people in these bigger groups. 10:28 So that's how we've developed. 10:31 Now, to sustain this, we need support. 10:35 And as we have grown, so has the cooperative groups. 10:39 They've learned their operative groups that do research as well. 10:43 Many of us are also part of those big cancer center, NCI, or what we call CTEP. 10:49 And I'm using the lingo and we can probably get into this alphabet lingle that we kind of throw out there, but it's really important. 10:57 that we understand that in order for us to continue to move forward as an organization, we do need collaborative research with industry, 11:06 with NCI government and grants. 11:09 And that's been a huge change in our world because the space is greater than ever before. 11:17 We have more and more industry people, more more researchers interested in sarcoma. 11:22 So it's actually a great time.
Why SARC Was Needed and How It Works 11:24 to be in this research field, when in the old days, we were in back alleys trying to pull ourselves together. 11:31 But now, Sir Kolob, based on a lot of great individuals that we have been able to come across, has been helpful. 11:38 And that's where Stephen has involved with Sarkozy, is how do you take an organization that started as a small little group and continue to be relevant 11:47 as we go forward in 2026 and beyond, not only for the big so-colmas, but also the rare so colas. 11:55 So Stephen, your thoughts on this, we've moved along. 11:58 Yeah, interested in your thought because like you said, the goal is to a catalyst in all this. 12:02 Stephen what do you think? 12:04 Yeah, I think to build on the other side of the coin. 12:07 So Dr. 12:08 Kudo touches on, the criticality of team science, multiple investigators with great ideas and what SARC does and drives is eliminate some, 12:20 not all, some of them barriers to multi-sector vibrations. 12:25 SARCs rather uniquely is the regulatory sponsor of a trial. 12:29 They can't underline that much, how almost unique that is. 12:33 It's not easy to do. 12:35 The NCI, National Cancer Institute, Corruptive Group Models, et cetera, grew up out of the need to drive team science, primarily across academic centers. 12:45 the upside to that as the federal resources, and there are centralized aspects of that. 12:51 The downside, and I don't mean in a negative way, the downside is, as Dr. 12:54 Okunov said, Sark is focused only on sarcoma. 12:57 As he said to me once years ago, a sarcooma doctor trying to convince a committee of multiple specialties, breast cancer, 13:06 endocrinology, whatever it might be, that this trial makes sense. 13:10 It's a bit swimming upstream because that's not what they live, breathe, and eat. 13:13 As Dr. 13:14 Bruno said, is SARC aren't us. 13:16 We're all metricoma. 13:18 And so the logistical aspects of writing a multi-center trial is not MITRE. 13:24 So SARK exists almost like a central clinical trials office across all these major centers around the US and also globally to facilitate and turn these 13:34 ideas into action. 13:35 turn potential energy into kinetic energy and translate in a relatively rapid space, an idea into first patient enrolled in the trial. 13:45 And we, SARC, handle all the logistics, contracting, regulatory submissions, database collections. 13:52 We bring in biostatisticians that work with the doctors on designing of studies. 13:57 I can go on and on, but the bottom line is we don't invent these studies within SAR. 14:02 Those are being invented by Dr. 14:03 Ushakuno, So with all these doctors around country, around the world, our job exists, as I said, is to effectuate their vision and to handle all the multi-center 14:12 or logistical aspects. 14:14 Fundraising, there's Dr. 14:15 Kuhn, who said we do need funding support to support this. 14:18 There's not a lot of money available in the sarcoma banks, if you will, financial banks of the whole world. 14:23 And I'll close by saying, Dr Kuno said something also important. 14:27 Drug companies, the biopharmaceutical companies these have these compounds and they could take them in multiple directions. 14:34 They could go after the big cancers like breast cancer or lung cancer, but it also biologically may work in a small subset of the 100 or 120, 150, I hear 14:42 of subtypes of sarcoma. 14:45 And if we can make it easy for a biopharmaceutical company, say we'll also study this in sarcooma, it's a win, win win around the table because we're encouraging 14:55 compounds or drugs or agents that may not have come into sarcoma, the existence of SARC and the cooperative groups makes it easier for a pharmaceutical 15:03 company to justify taking this drug that costs a lot of money to develop and to also add on or even primarily target sarco. 15:11 So that's what SARCs does. 15:12 We reduce the barriers, not only, of course, collaboration across academic centers, but also the barrier between the biopharmaceutical industry and the 15:23 investigators then actually have the ideas of how to take these drugs and study them and publish and hopefully eventually get these drug approved by the FDA. 15:30 Oh, thank you both. 15:31 That's a doctor. 15:33 I love it. 15:33 And I think it's really interesting. 15:35 As a patient, as a solitary fibrous tumor patient. 15:38 This sounds amazing because if you look at the studies on solitary fibers tumor, a rare type of sarcoma, the sample sizes on any of our, 15:46 not the meta-analyses, but just our regular studies that are done at a primary institution. 15:51 Sometimes the enrollments are fewer than 20 people. 15:54 So you're trying to get actionable data from just such a small subset. 15:58 And it's really hard to really say, we've got sample group here, sample groups here. 16:02 You can't really do treatment arms very well with those, with that small number of people and so one of the things that I'm really excited about SARC, 16:10 like you say is you can help collaborate and catalyze, I like your word, trying to get some of this research done across multiple institutions in the United 16:20 States and abroad. 16:20 Dr. 16:21 Okun, I wanted to ask you, can you give us an example of, are there times when you have done that with other research, maybe not necessarily solitary fibrous tumor, 16:30 but times where you've collaborated across several institutions, in United State or abroad, and how that went? 16:37 Yeah, that's a great point. 16:38 And when you start to have rare tumors, and there might be less than 500 total across the United States, you're going to need an elaboration. 16:50 Sark has been able to do multi-institutional, multinational studies. 16:56 I'll just highlight one right now. 16:58 We're running a clinical trial with four institutions on clear cell sarcoma. 17:05 Now, for those that don't even know anything about clear cell sarcoma, it's probably very similar to thalagery fibrosumera. 17:10 It's rare. 17:12 But there is this very specific translocation that's important. 17:16 So there's an immunological type of a study that being run with two collaborators, one from Memorial Sloan Kettering, as well as one Royal Marsden in London. 17:27 And we're very fortunate that we did have support from industry and expertise. 17:34 on both the Memorial Sol Kettering side and the Royal Marsden side to go develop this study. 17:41 But in order to answer a study that is only about 200, 400 total patients a year, we needed to do cross-pond across the multi-national study and because 17:54 of that we've had two sites up and running and then we brought two other sites in the United States on board. 18:01 And this is how we as an organization can help get a study, get industry involved, and get the expertise. 18:10 of clear cell and run a clinical trial, not only in the United States, but also in England at this point. 18:18 Now, the hope and goal is that we will have more of these. 18:21 So if we have a solitary fibrous tumor investigator that's interested in doing a new novel approach and needs to pull together resources,
Multicenter Trials and Rare Sarcoma Collaboration 18:30 they will approach SARC. 18:33 Sarkin will work with that institution and or industry and pull together all the clinical places that have solitary fibrous tumor and then run the critical trial. 18:44 That's how it is. 18:45 As a patient, you don't know where the big sarcoma centers are. 18:50 Now you as a physician, Dr. 18:52 Crain know that, but Sark has done a great job of developing what we would call sarcooma centers. 18:59 And maybe you can ask Stephen Young about that because I think this is a good resource for patients of where high volume sarcomas are being seen. 19:10 Yes, a lot of it is done in the community with the local oncologists, but ultimately, just like your journey, you do need that expertise and where do you 19:20 reach out if you're not a physician? 19:22 So we have developed on our website and a lotta work and lotta collaboration, the Sarcoma Center, what we call the MAP. 19:31 I really appreciate that answer and I know I echo the prayers of hundreds of people with solitary fibrous tumor. 19:36 We hope that as you coordinate with people in Florida and across the United States and in Spain and England where they're studying some of these rare cancers 19:45 that eventually that will turn into a clinical trial and that would just be an answer to so many prayers like I say to be able to say that like what you're 19:53 doing with clear cell sarcoma, that eventually that comes into solitary fibrous tumor and really all of them. 19:59 What a cool thing. 20:00 Let me echo what she said about the Sarcomas Center. 20:03 I'm a primary care doctor in a rural area, which means I see a little bit of absolutely everything. 20:09 There's some stuff I thought I would never see and I'd see it and like, oh, good thing I studied that in medical school because I come across everything 20:16 because one day I'll be delivering a baby and the next day, I am taking care of somebody in the nursing home. 20:20 and the next day I'm taking care of somebody in the intensive care unit, or sometimes all those things are the same day, 20:25 and I work in an emergency room as well. 20:27 So I get a perspective of a lot of different fields of medicine. 20:31 With that in mind, I am spread a mile wide and an inch deep, hopefully more than an an. 20:36 But the concept is that you can't have the really in-depth working day-to-day knowledge of every single disease if you treat a broad variety of stuff. 20:43 And to that end, if I see someone that does not see these rare types of sarcomas, ever or extremely rarely, they're going to have some working knowledge 20:53 but not the depth of knowledge to be updated on the latest and greatest research in those spaces. 20:58 And so having sarcoma centers of excellence where we know that they really have a very deep knowledge, maybe not a mile wide, 21:06 but a mild deep, a really deep on something has been really important for my own personal journey. 21:11 I wanted to turn that over to you, Stephen. 21:14 Would you mind talking a little bit about that? 21:15 What has SARC done to to collect all that information across sarcoma centers and where could patients, if somebody's listening to this or if you're a physician 21:24 listening saying I need to refer someone to a sarcoma center, how do people find that? 21:27 What have you been able to do on that You know, while the two of you, two physicians were talking, the word access kept coming up, 21:33 access to expertise. 21:35 And you mentioned Dr. 21:37 Crane, that you're a primary care doc in the rural community. 21:40 You could see something that, you don't know what to make of it. 21:43 As you said, your mile wide and a couple inches or couple feet deep. 21:47 They say, You've not seen it, but it's seen you. 21:50 you may not recognize it so exactly that. 21:52 Go ahead. 21:53 So therefore, the Sarcoma Center's directory grew up by the fact that we were finding out that patients and patient advocacy organizations around the world 22:00 were steering their patients to what we then called the SARC member centers map. 22:06 These were centers that were done trials with. 22:08 And we rather quickly realized sort of the emperor had no clothes because the map was who were collaborating with on trials did not necessarily equal a 22:18 center that had multidisciplinary care across and breath in depth. 22:22 They may only see five patients or 10 patients, 20 patients a year. 22:26 You both as physicians know it's experience. 22:28 I'm not a doctor, so I am just extrapolating here. 22:31 So finding where to send patients. 22:34 Neither to find yourself or a loved one or your own patient that you see something you don't recognized. 22:39 So this tool grew up out of the fact that we realized we needed to put some form and function behind it. 22:44 What we did is we created this questionnaire where centers objectively identify how many patients they see per year in sarcoma space. 22:52 Do they have a multidisciplinary team with monthly tumor boards focused on sarcooma? 22:57 Do the publish? 22:58 Did they drive research? 22:59 All these end up into a factorial calculation of objectively determining, do they get on the map or not? 23:05 And it's not a subjective decision. 23:07 It's objective. 23:08 Do they meet this objective criteria so that at the end of the day, the three of us as human beings would feel comfortable sending a loved one, 23:16 for example, to any one of these centers. 23:18 And yeah, there's a strong concentration in the United States. 23:21 We've put a big push to ex-US as well. 23:24 So this is a, so Coldwell obviously is not limited to the united States, and so we do have approximately 25 centers outside of United states and within 23:32 the US, about I think 85 or 90 at this moment. 23:35 And the reality is as a human being would be comfortable sending myself or a loved one to any one of those dots on the map. 23:41 So this is a tool that you can find centers. 23:44 And as I said, it could also help frontline clinicians who doesn't necessarily can't pick up the phone and call someone at Morrill Sloan Kettering or the 23:52 University of California, San Francisco, or whatever it might be. 23:54 They can pick the phones. 23:55 All the contact information is included in this. 23:58 patient navigators, the physician that's in charge of the sarcoma program, email addresses, that key in today's world. 24:05 So access is key on that. 24:08 As I said, The Sarcomas Centers Directory was ideated to help patients, but it also can help frontline clinicians or even oncologists or surgeons that 24:17 don't necessarily know how to escalate this for their patient and help them get to the center.
Sarcoma Centers Directory and Patient Access 24:22 And timing is everything, as you know, personally and professionally. 24:25 every month, every week that goes by, it decreases the likelihood of having a positive outcome. 24:30 So speed is the essence. 24:32 We're very proud of the Sarcoma Center's directory, which we were able to get funded for the first two years. 24:37 Were actually quite frankly seeking additional funding support as we speak so that we can expand and grow it even further. 24:44 And the last thing I'll say is we also included in part of this process developing a patient advocacy directory. 24:51 of all the patient advocacy organizations. 24:53 Many of them are subtype specific. 24:55 And as we mentioned earlier, there are more than a hundred, whoever you ask, is more that a 100 types of sarcoma out there and not all, 25:02 many of the, some of have foundations that are set up specifically for that histology. 25:08 That's what they live, breathe and eat. 25:10 Lyo myosarcomas, whatever it might be. 25:12 And the last thing I say, we also added a clinical trial finder matching tool to help patients and frontline clinicians identify clinical trials that their 25:21 patients may or may not qualify for. 25:24 And I'll stop there. 25:25 No, it's a wonderful collection of resources. 25:27 Just tell people, some people are going to access on a computer. 25:30 Others are just listening to this while they're driving to work or exercising or something. 25:34 Where do they go to find that? 25:35 So if somebody says, I want to go Sark's website and I wanna know where can I find sarcoma centers of excellence or contact information, 25:43 or I'm a frontline physician. 25:44 I have a patient with some sarcoma I've never heard of. 25:47 How do I. 25:48 Find information on that. 25:49 Our website is sarctrials.org, trials.or. 25:53 Sarc is S-A-R-C, Trials, like clinical trials dot org. 25:58 And in there there's a menu, there is a patient resources tab that will allow patients to access all this information. 26:05 We also have a researcher facing us, a medical, scientific facing work tabs with all these committees and structures, et cetera. 26:12 So one stop shopping, sarctrials.org, and you can find what you're looking for. 26:17 Excellent. 26:18 Thank you. 26:19 Dr. 26:19 O'Koon, I wanted to ask you a little bit as we go into this. 26:23 Again, you mentioned alphabet soup. 26:25 There's lots of acronyms we use and I have to be a bit careful with my patients. 26:29 I try to tell them I speak doctor and patient. 26:32 It's important to make sure that we speak both languages. 26:35 We throw around the words CTOS, ASCO, and SARC and not everybody knows what those mean, but there's a meeting that SARCs has every year in preparation 26:44 for these large cancer meetings. 26:46 Do you mind defining those terms and talking a little bit about what SARCS does in relation to some of these larger scientific gatherings and how that 26:53 might affect patients and researchers who want to get involved? 26:58 Yeah, that's a great point because we learn because, we live and breathe it every single day, but the two major mediums. 27:06 that we and the sarcoma realm really track up, and there are many others, is ASCO. 27:14 ASCo is the American Society of Clinical Oncology. 27:18 It is a yearly meeting typically in June, the first weekend in the junior realm at time in Chicago. 27:25 There are roughly 35,000 other oncologists and then learners and everybody go to that meeting. 27:33 And that's where typically the education of all oncology and in part, hematology there. 27:40 They also have groundbreaking research presented there and that is a great opportunity. 27:46 Not all sarcoma, by the way, but this is great avenue. 27:51 If you want to know anything about oncologist, ASCO is the place to go. 27:57 It has multiple days in Chicago. 28:00 However, It is a huge meeting. 28:04 It's in multiple buildings, multiple venues, and where did the sarcoma fit into that space? 28:10 And it's hard. 28:12 So we decided to have our meeting before ASCO, American Society of Clinical Oncology. 28:19 And we have a meeting there. 28:22 We have it before the start of an ASCo, that allows all the Sarcomas people to come. 28:31 We have a scientific part, we also have more of a patient-facing part. 28:36 And then we kind of share what we are doing as an organization. 28:40 That gets everybody in the mood, if you do Cercola, to kind start the week out there at ASCO. 28:46 Then we hopefully have some highlight of what WE do at an to share groundbreaking research that Zircoma does. 28:56 And fortunately this year at ASCOL, we were on the plenary session. 29:01 Now, what is the plenary session? 29:03 That means of the 35,000 people there doing all research, they select four studies that they want to present, not a bone marrow sarcoma. 29:13 And we're fortunate that Sark, Dr. 29:16 Dixon and SARK-41 in a study using a bemucite clip in the different sarcoma called D-differentiolagma sarcooma was one of four plenary session. 29:27 So we were very excited and we're very grateful for Dr. 29:31 Dixon and his team, and the research team at SARC, in the multiple centers that participated in this study to do this studies. 29:41 Again, that is that part. 29:43 The second major meeting that it is there, it's called the Connected Tissue Oncology Society called CTOS. 29:52 Now, CTOS by design was done several 20 plus years ago as well, and it pulled together all disciplines of all people only focusing on sarcoma and started 30:05 as a small little group with pathologists, radiation oncologists surgeons, medical oncologist. 30:13 And now it's quite big. 30:14 This is where also major publications, research, and gathering that education only for sarcoma is. 30:24 And then this year, it is six months different than ASCO and CTAS is now in Seoul, Korea later this fall. 30:34 And there, because all the Sarcoma people are there we at SART also have a meeting before they start the whole several-day journey of learning everything 30:47 about Sarroma, but we also a session there as well. 30:50 So those are the two major meetings that we physically go to ASCO, American Society of Clinical Oncology, and CTAS, Connected Tissue Onchology Society.
Major Sarcoma Meetings: ASCO and CTOS 31:01 And Steven and his team pull together, along with our chief scientific officers, some great meetings. 31:07 We also have patient advocates that come to these meetings, maybe you'll ask our patients and family members invited to the meetings and we can share. 31:18 Yeah, Stephen, do you mind going over that? 31:20 Because if I'm a patient, if i'm, a family member, If I am a general oncologist or someone just anybody, how do I sign up? 31:26 If i said I want to go to one of these meetings and actually in my case, like I said, I've never met somebody with solitary fibrous tumor. 31:33 It's just like in person I met online. 31:35 I have several friends that have the, uh, social media connection that way. 31:39 But if I wanted to actually meet somebody else that's in this space and meet some of the researchers, would I be welcome? 31:45 And how do I go about registering for that? 31:47 So if anybody listening, how would they go First, it's a big yes if patients and family members and loved ones are more than invited to this meeting. 31:54 We actually go out of our way to make it have an element of patient centricity to these meetings. 32:00 It's primarily about medicine and science and studies, but we, for example, our meeting that we just had in Chicago at ASCO. 32:09 included the keynote speaker, the closeout speaker was a patient survivor, a very well known communicator, podcaster, etc. 32:17 So we make sure we get the patient voices incorporated in this. 32:21 Secondly, when our presenters present science and medicine from the stage, from a podium, they also go out of their way to not only use acronyms. 32:31 They might explain, I don't know, gene therapy, then they probably will have a sentence after that explaining what we mean by gene-therapy in relatively 32:39 lay language, which I appreciate because I'm a lay person. 32:42 So they do a great job at, if you will, not, I wouldn't say dumbing down, but to make sure that the audience in the room, 32:47 no one is saying I don't understand what they're talking about. 32:50 They may not understand every subtle detail of the science, they understand the gist of it and that's what would we do. 32:56 We also, as I said, highlight other patients throughout the three-hour meeting at ASCO in Chicago. 33:03 And then during CTAS, a number of patients and advocates do go to the CTASE meetings, which I don't think Dr. 33:09 Kuno mentioned is usually alternating years within the United States and then outside of the And due to vagaries of scheduling, 33:17 et cetera, outcomes probably from our COVID era. 33:20 This year, in two months, it's going to be in Seoul, South Korea. 33:24 Next year it'll be Vienna and Austria. 33:27 The year after that it will be back in the United States. 33:30 So there's always an opportunity for folks that people travel to either Chicago for ASCO or also alternating years to CTAS within or without the U.S. 33:40 And I guess the only, what was the other point you asked about? 33:43 I apologize. 33:43 I just wanted to know, like, how do people actually sign up? 33:45 So if somebody listening to this says, Hey, I actually want to go to. 33:48 And, and I think that would be useful information to collaborate work. 33:51 How does somebody sign. 33:53 So for ASCO, we actually have a formal registration process. 33:56 It's completely free to all registrants with the exception of those from the biopharmaceutical industry. 34:03 That's just the way we structured it. 34:04 So patients can register, they go to our website, or they can click on meetings and there they could find the links to register for. 34:13 For a CTAS, we're actually within the meeting envelope itself of the connected tissue oncology society. 34:19 And there's no fee to get into the SARC session. 34:21 There's not pre-registration part of this SARCs session, but you do have to be technically having registered for the connective CTOS meeting itself. 34:30 Just to clear on that. 34:31 Thank you. 34:32 So I wanted to ask, Dr. 34:33 Okuno, I want to another question as it was kind of our last segment here. 34:37 We live in the era where the information age, instead of treating the what, we're trying to get to the why. 34:44 In most cases, where understanding what genetic abnormalities actually exist within the cancer, or understanding the microenvironment around the cancers, 34:52 there's just so much being done in this space. 34:55 If a researcher or a patient wanted to get involved a little bit more with SARC, or specifically we're talking about solitary fibrous tumor in my case, 35:05 how do people get involve in that? 35:07 Because we would want to do everything possible to help design clinical trials around this information that's already known because there's a lot of primary research, 35:14 but trying to a clinical stage trial around some of these sarcomas is very challenging. 35:20 So what can an individual physician or patient or researcher do to support the work of SARC or to take the next step if they wanted to get involved. 35:29 Here's, I'll just put a plug in for the cures. 35:33 The organization that you were involved with, which is called the, these patient advocacy groups do have medical advisors that really work well together 35:43 to help drive science. 35:46 But if you are an individual researcher interested in solitary fibrous tumor, you probably know the community of other doctors, 35:56 physicians, and scientists working in that. 35:59 And at SARC, we're very fortunate. 36:01 We have Dr. 36:02 Jonathan Fletcher, who is our chief scientific officer who chairs the Discovery Translation Committee. 36:10 He and his team, the board, and the committee work extremely hard to engage and collaborate science, the basic science core science group together. 36:24 And they hold meetings called SAG that are really bringing in different researchers, not necessarily researchers for clinical trials per se,
How Patients and Researchers Can Get Involved 36:34 but during the basis core research. 36:37 So if you are an individual that has a great idea, has concept for a clinical trial, they just reach out to me and our group and we have a committee that 36:48 reviews it. 36:48 We're very fortunate to have two individuals. 36:51 Dr. 36:51 Greg Cote from Mass General Leads our what we call clinical trials development committee and the vice-chair is Dr Libby Davis at Vanderbilt. 37:00 And they help support individuals and industry develop the trial. 37:06 If you want to do basic science research, they reach out to us and then we can connect them with the Discovery Translation Committee because there are 37:14 other people in the circle of the world doing that work already. 37:17 So we are the conduit to get people there. 37:22 And if you're a patient that's interested, I would probably start out with, you can reach out to our group as well, but you do at the solitary fibrous 37:31 community have CuresSFT, which is an organization that is designed to bring together researchers for specifically SFT. 37:40 And hopefully if guys come up with a trial concept, You'll want to come to SARC and we will develop that study. 37:49 No, thank you so much. 37:50 Let me just plug that again. 37:51 Curesft.org is a recently launched foundation specifically for solitary fibrous tumor. 37:57 I strongly encourage you to, if you're a solitary fibers tumor patient, family, researcher, anybody, that's a wonderful tool that has recently been launched. 38:05 Our friend Steve McBee has done a lot of the work on that and I just want to call that out. 38:09 as we wrap up our time here. 38:11 Before we do the wrap-up, Dr. 38:12 Crane, I want to go about something else back to the patient centricity and the meetings that you're asked about. 38:17 We have a two-hour breakfast that leads into this meeting, an hour and a half breakfast. 38:21 The opportunity for patients to be eating a bagel, talking to a field leader, and just say SFT research is built into that. 38:30 Another thing I wanted to build in is in each of our clinical trials, we actually embed trained patient advocate insurer So we make sure the patient's 38:39 voice is in the room and respected and incorporated into the study design and some of the patients' reported outcome tools and go on and on. 38:46 But that's rather unique that we made sure that the patience are embedded in that. 38:50 So, we have a group of trained research advocates that are being embedded into each of our trials. 38:54 Just two points I didn't want to leave off the plate. 38:57 We could talk for another hour and a half about other things that Sark are doing. 39:00 I want make that sure patient aspect of this is underlined. 39:04 Yeah, like I said at the beginning, I'm so excited about SARC and what they're doing and the research and work. 39:09 And not only is it a high-level major institution, you can get involved as a patient. 39:14 You can be involved with a researcher. 39:15 There's just a ton of resources that this organization puts through. 39:19 The other comment is, we're all people. 39:21 No matter where we are at, no matter what you are doing, when you interface with somebody and you actually realize, hey, 39:26 this person is a human being. 39:27 We share a lot in common. 39:29 And you meet the researchers and the researches meet, the patients. 39:32 I think there's a lot of value in that. 39:34 Stephen, do you have any other places where you would guide people to, to contact you or other people if they wanted to find more about SARC? 39:42 I'd say our website is a good place to start. 39:44 I should also point out, and you may have already touched on this, we have a series of podcast series that are run within our organization as well. 39:52 We'll call it the Sark Talk Podcast Series. 39:54 Dr. 39:54 Cronow is the host on that. 39:56 we also have it Sork Talk Journal Club, which focuses on cutting edge, recently published or presented data. 40:02 And then the third one, which is also new is called the patient experience led by a patient survivor and no MDs, no degrees after the names folks sit around 40:11 and talk about their disease and their experience and the loved ones and experience. 40:15 So there was also those avenues as well. 40:17 And I would encourage people to check those out in addition to, of course, your podcast, Richard. 40:21 Yeah. 40:22 It's so wonderful. 40:23 I consume many of them already leading into this call. 40:26 Thank you. 40:26 Those are wonderful resources. 40:28 Dr. 40:28 Okuno, do you have any final thoughts as to where you would turn people or any recommendations for people who are listening to this excellent podcast? 40:37 As we say that there's a wealth of information, some of that information you have to wait through to kind of make sure where you go. 40:45 But we do steer people to our website to make that if you are interested in connecting with major sort of COLA centers that have multidisciplinary high volume, 40:56 it's there. 40:57 The other part too is that we really want to makes sure patients are engaged in their patient advocacy groups. 41:07 SART, with the help of Denise Reitke and some other individuals started the Sarcoma Coalition, which is all the patient-advocacy organizations out there 41:17 because they provide the local, boost-on-the-ground expertise of their specific disease, just like CURE's, the website that you have. 41:30 It is there as well. 41:31 And that's where we don't want to own it. 41:33 We say, if you want, to know about Lyme Myosarcoma, go to the National Lymyosarcoma Foundation. 41:39 If you wanna go do, learn more about solitary fibers tumor, cure solitary sft.org. 41:45 You wanna know more by EHE? 41:48 Go to our sarcoma coalition and go to the EEG website, same thing for Desmoid. 41:53 So if you are there with a rare disease and don't know anything, you can come to SAR and we can get you located to a different organization with AI and CHAP,
Patient Advocacy, Resources, and Closing Remarks 42:04 GBT and CLAWD, and you're going to find it. 42:08 The real important part is to find out who is the right group to understand. 42:13 And this is where we at SARC kind of work with these organizations to make sure that we feel comfortable with the mission, 42:20 vision, and the individuals that work in this space. 42:23 Steven, you were going to say? 42:24 I just wanted to put in a plug also. 42:26 Obviously, I said earlier, SACOMA doesn't only happen in the United States. 42:29 There are advocacy organizations around the world, And there's this great group called the Saccola Patient Advocacy Global Network, 42:35 SPN. 42:36 that had a sort of a European centricity to it early on, they continued to expand and work closely with the sarcoma coalition. 42:43 And so there are a lot of advocacy groups out there that can actually help patients access expertise and be answering layperson to lay person questions 42:52 about the disease, not necessarily always an MD or a physician or scientists explaining it. 42:57 So I can't accentuate Dr. 42:59 Okuno's point more. 43:01 You said it before, as an SFT patient who felt alone, you have never met another, this is just like a pig in slop when the patients get together and realize 43:11 I'm not alone and there's someone who is struggling with the same thing and I am trying to figure out what to do with my son, 43:16 daughter or myself or my mother, how to handle them. 43:19 These groups are invaluable resources. 43:22 I just want to thank both of you. 43:23 I think this has been very useful, very instructive for people who listen. 43:29 Everybody who listens to this will take something from it that's actionable and useful and realize if you're a solitary fibrous tumor patient or a sarcoma researcher, 43:38 realize you are not alone. 43:39 Come to these meetings. 43:41 There's a group of people that are very interested in this. 43:43 And I'm excited, I am enthusiastic, and I have a better day for having this conversation. 43:48 and appreciate both you so much for taking the time to do it. 43:52 We appreciate you doing this for the opportunity. 43:58 Thank you. 43:59 I echo. 44:04 Thanks for tuning in to the Doctors Making a Difference podcast. 44:07 And thank you for what you do to help your patients and your community. 44:10 Your work truly helps so many people. 44:12 We produce this content to have the tools you need to stay in medicine and to highlight the amazing work being done by physicians around the world. 44:19 Please note that while I am a physician and many of the guests on this program are also physicians or other professionals, 44:25 the discussions on the podcast do not represent my employer or any professional organizations to which I belong. 44:31 This podcast is for your information and entertainment only, and should not be taken as professional advice. 44:37 You should seek appropriate professional advise pertaining to your own situation. 44:42 Please check out more of our content on our website, doctorsmakingadifference.com. 44:46 Also, please follow, like, or subscribe on your podcast player or YouTube channel, and give us a five-star rating. 44:52 It really helps to spread the message. 44:54 Finally, if you'd like to be a guest on the podcast, Or if would like nominate someone else to a be guest, Please visit the website or email admin at doctors 45:04 making a difference dot com. 45:05 See you next time.
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