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Philippe Speiss: It's heartwarming to first of all give this talk here because the origins of the Global Society really lie in the foundations of this institution as really the co-founder of the Global Society of Rare GU Tumors. And I think there's not much good things that happened during COVID, but I do think this society was really got its legs and it's origins really during a time where we could do a lot of things virtually. So thanks for the partnership, and I'm very excited to share I think a lot of our, I think early achievements, but I think more importantly our horizons in the coming years and months. So I don't have any specific disclosures other than my roles on the NCCN and with Andrea on the ASCO EAU panel and my role as the president of the society.

So a historical perspective, so as Andrea shared with you, this society is really a grassroots effort from some conversations that I would say research collaborations that Andrea and I have shared over the many years together is realizing that ultimately rare cancers, as was discussed previously, are really underrepresented. Particularly in many parts of the world where there's a large number of these cases are being seen and ultimately are not represented in clinical trials or in peer reviewed publications. I'd also like to take a step back and sort of say that when you talk about rare cancers, we're not only talking about testis, and penile, and adrenal. We're talking about variants of various types of cancer.

So defining what we're ultimately talking about and what the society is about is one of the critical steps. And we'll talk a little bit about our pathology committee, which has been pivotal to the early achievements of our work. So the society started back about two years ago, really again, Andrea and I, and Andrea served as the vice president and really the co-founder of this society. But really we began by really looking and reaching out to many parts of the world were really, we had leaders, we had people who were very engaged and wanted to do research and collaborations with us, like for example, India and South America. But it really didn't have a venue to do so.

And I think this has really been heartwarming is they've taken on this role and this opportunity and have really stepped up and I think we've seen in recent months, I think some early achievements. This is definitely possible related to strong leadership and at partnerships. And I definitely thank Professor Montorrisey and Brigante for really working with us to make sure we can work with organizations like the EAU for example, as well with as the [inaudible] with Alejandro Rodriguez and as well as other societies like the SIU will share some slides with you is we had a Global Society, a rare GU tumors essentially session at the end of the SIU. Really again, showing the engagement of major organizations don't want to work with us. And on that means I think we're very engaged to partnering again with similar societies who have similar interests and opportunities.

So I will say that our mission is really focused, related to advancing the care related to managing of rare GU tumors through global collaborations of the scientific community. And I think central to this is we want to make sure we're central in patient advocacy, making sure the patient's voices are heard. I think that that's a theme that we've heard throughout this. These talks today is not only in the design of clinical trials we discussed, but the endpoints need to be relevant to the patients not only to us as clinicians. So infrastructure, we have a lot of leaders that are part of the Global Society. We've had really great partnerships and I would say many of these actually you see here, particularly on the left side of the green, are patient advocates. For example, for patient advocacy, Orchid has been really central to our work, the Statistical Cancer Society, many groups like the VHL Alliance have reached out to us to want to do webinars and educational platforms and venues and I think that's really been something that's been spectacular.

I definitely want to take a minute to also recognize Gagan Prakash, Gagan has been and has taken on the leadership role at Todd Memorial of Urologic Ecology, but Gagan has been an incredible leader for us in India in many parts of the world that have been underrepresented. So this is the infrastructure we've been fortunate to have people and leaders like Ashish that have worked with us on our membership and partnerships. And I will tell you and we're going to highlight I would say some early successes. We have a few subcommittees which have really hit home runs in the sense that they've really taken on this role and opportunity to really elevate it. And I think Diego mentioned one of them, to me the adrenal committee has been really spectacular committee who have done some really great work. I encourage people who are looking for a great platform in clinical practice of how do you work up an adrenal mass, how do you treat an adrenal mass?

What are treatment algorithms and diagnostic algorithms? You'll see the link to the adrenal website and I'd say it is a really, really good one. It was highlighted in European urology a few months ago, but I definitely encourage you all to look at it. So much like my colleagues, our society is, I would say probably at an earlier level of evolution, I would say we're still growing, we're still looking to take on additional roles and opportunities. But I will say that this is one, the article which I say was central to really raising global awareness to the Global Society. This is a nature of user ology, which Marco Bandini been from this institution as you all know, has been a great leader and I would say one of the definitely rising stars within the Global Society, but also within urology. And Marco and the group really highlighted what was critical, which is that you see that there's many obviously groups that are focused in rare cancers, but the honest truth when you look at it and as the next slide will show you, there's a lack of consensus and management across these guidelines.

And I've sort of seen that firsthand. I will share some personal notes, having been involved as the vice chair of the NCCN committee on Penile and Bladder Cancer or for many years and now seeing the ASCO EAU guidelines and being involved in those, there's a lot of heterogene in how we treat. And ultimately the roots of that ultimately is the level of evidence really in terms of how we care for patients is really still at a very rudimentary level, particular for rare cancers. And I just have a few slides to sort of illustrate this is when you look for example on management of penile preserving surgery, you see many parts of the world, and this is a JCO global oncology piece that is in preparation at this point. You see that there's high level or heterogeneity on how we do this across the globe.

High focus particular in centralization centers in Europe related to penile sparing surgery for example. But you see many parts of the world, particularly in Latin America, for example, high degree of lack of heterogeneity and how that's done. I would say that's unfortunate. I think who ultimately pays the prices, our patients and their families. This is another example to short illustrate as well in terms of management and in I'd say of nodal status in patients who are clinically node negative, you see that dynamic sent lymph node biopsy, for example, North America, low level of penetration versus high degree of more inguinal lymph node dissection. But again, you see it's across the board and how we do this across the globe. So how on earth are patients to know how to treat and how to get their given care, when we can't even agree as a global community in doing so.

This is also related to chemotherapy, I would say INPACT trials as we were discussing earlier. Hopefully we'll give us some answers related to this, but I would say we see this just for centers that we've tried to engage for the INPACT trial is there's a lack of utilization of neoadjuvant chemotherapy in many European centers versus North America that's a little more advocated, but that's based on a phase two study of 30 patients. For many of our diseases you'll be laughed out of the room if you presented this at ASCO GU and sort of said that was standard of care based on a trial of 30 patients. I also think this really highlights that there are really great resources out there for patients. This is a issue of seminars of oncology nursing and Katherine Patterson reached out to us and she's part of our group, and this is a dedicated issue of this journal to rare cancer.

So if people looking for... It's a free resource, it has a number of different articles, but also this article I think is timely because it is written by patients for patients and it highlights all the various resources for patients out there related to rare cancers. So what have we achieved in the last 18 months? Well, I think we've done a fair bit, but I think a far more to do. We've clearly had... And I would say the first global symposium, which we dedicated to penile and testicular cancer was, I would say truthfully, and I disclose I'm biased, was wonderful because we had the people who designed these clinical trials, testicular cancer and penile cancer debate among themselves, the strength weaknesses and where the horizons of this were going to be. And we had patient advocacy specific sessions highlighting again, what are the unmet needs. I will say as well that this was very well attended.

We had over 500 people attending, many of these being global clinicians across the globe who were really engaged and wanted to sort of learn from ultimately this global initiative relating to elevating patient care. These are some of these areas and resources and ASCO, for example, has been a great resource to us. I definitely acknowledge the SEO, the SIU, EAU and the Cal for really wanting to work with us. And Ashish, thanks for facilitating some of the work we've done with UroToday and OncLive as well. And therefore, Petros is social media guru as we all know. So in terms of our subcommittees, this group has really been fantastic. I think if we can mimic this across our other disease sites, we will be incredibly successful. And I would say the gauntlet has passed to all the people in this room.

If you want to be engaged in various initiatives to elevate the care of rare cancers, we're always looking for motivated, interested, and engaged colleagues and trainees and faculty. And Andrea has facilitated a lot of this, but this group has really done a really fantastic job. They've really sat down with global leadership across the world to try to look at this and try to develop good educational and clinical resources. And this is the website and this is what it sort of highlights again in terms of how you manage patients and really providing highest level of evidence. And I would say it's going to be... We're just redoing our website right now. It should be hopefully launching in the next month or two. But it really highlights, I think, a great resource that you can go and when you're sort of in clinical practice and trying to understand how you work up these masses.

And this is again, some of the resources related to it. Roger Lee, as Ashish and I know has been a great, I would say young in innovative thinker in the bladder cancer space. And he's worked with his committee and Jeff has been a big part of this. I think the partnership that we've had with Jeff and Foundation Medicine has really been very important to us because clearly in rare cancers there's great opportunities to understand these tumors a little bit better. As we all know, it's very hard for our pathologists to agree on sometimes characterizing these tumors. So I think looking a little deeper in terms of the mutations, in terms of actionable sites that we could target these tumors is a great opportunity. And Roger's really focused in bladder cancer, but I think this has been one of the first area the genetics to me has sort of focused is really to look at variants of bladder cancer.

And the first one is CDH1 mutations. Jeff will be proud of me, not to specifically state histological variants related to this, but I will tell you that it's really been great work, which I think highlights I think what we want to do, we want to focus on variants, we want to focus in tumors that are underrepresented. And again, as I was mentioning earlier, have global registries of these patients so that we can look at this and understand a little bit what if there are differences in practice. You may all know this, but I was at a meeting about last year and I had colleagues from Chile mentioned to me that their incidents of testicular cancer in certain parts of Chile are 10 times higher than they are across South America. We need to understand why that is. I think there's still a lack of characterization even in our current day and age, understanding these tumors.

So again, this is some of the work that's being done and I think a publication is being prepared related to the work on specifically plasmacytoma, but specifically CDH1 mutated tumors, which I think will definitely carry fruit. And as I mentioned this committee here, Lara Harrick is a director of pathology, she also involved in the leadership of the US Cancer Clinical Pathology Society in the United States. And she's also taken on some global leadership at Lara and her team have really started developing some great webinars for pathologists related to characterizing these tumors. As we all know, as surgeons or clinicians, if the diagnosis is wrong, oftentimes our treatment will be wrong. So Lara has sort of engaged some of the global leaders in these various tumor types and to try to help develop the tools for our pathologists to understand and to really standardize the characterization of these tumors.

One of the fundamental questions I've sort of passed on to Lara and she's developing at this point is, as a society before we're going to sort of move forward, we need to define what a rare tumor is. As I mentioned to you, to me it goes far beyond three tumor types. It goes to characterizing these tumors and to the work that Jeff has sort of been doing, looking at mutations as well and sort of selecting and understanding the ones where particular were challenged in clinical care is the ones where we should clearly focus our energy on. And I would say that if you're looking for a great resource for your pathologist, I would encourage them to reach out and to us because those pathological resources and webinars are online and are available related to penile, testicular, adrenal tumors, for example. And there's other ones currently being developed as well on urethral cancer.

On that note, I would definitely go on to sort of highlight that our Global Summit, the first one which we had three years ago, which unfortunately two years ago, sorry, which was again a virtual meeting clearly in the setting of COVID was the only way to do this was highly successful. But it really is something which really highlights where we want to go. And I'm looking at Laura here who's doing some great work with our group related to developing some journal clubs. We have one that are being developed specifically in VHL, which I think is a wonderful opportunity. It also developing some tumor boards across centers across the globe so that we can learn from one another and also integrate, I think the expertise of clinicians throughout the world in terms of clinical care. The summit we got and the feedback we got from the first Global Summit was overwhelming, highly successful.

But clearly this is just a start in terms of what we want to do and last Mr. La Lease, for us to be successful as a Global Society, our rear tumors, it takes great partners and I couldn't be more blessed to work with Andrea as my partner in crime. And I think that's, that's really been exceptional. Gagan, I would say has taken this on to try to grow us as a Global Society and brand. And I definitely see that there's very exciting things happening in India and South America, which we'll be definitely sharing. I was just at a meeting in Morocco a couple months ago and they would want us to be part of their Moroccan society meeting for many years to come. So we're looking for global partnerships. That doesn't mean to say that we want to distill our brand and our identity, but really it's to really help elevate leaders and expert across the globe, make sure they're represented in developing a common message in improving patient care.

Last, but certainly not least, as I mentioned, this is our website and the resource that we have, and I have both myself, Andrea, we need to change... For some reason we still have your old website, but well email, but we'll definitely do that on the next slide. But I think one thing that we wanted to highlight, and I think I applaud, I think my partner again in crime for doing this is global clinical trials. Clearly as Noel was sort of sharing, and I applaud the initiative of Stampede to do this is in rare cancers, there clearly needs to be an effort to do this together. Obviously it always comes down to financing when you do trials, but there are ways that we could do this very innovatively, very creatively and also using some essential fundamental standards of care and really understanding, for example, surveillance strategies or when we should ultimately potentially negate certain types of approaches and when ultimately we should try to standardize other types of approaches or diagnostic tools.

And definitely more to come. I think, Andreas sort of wrote this, I would say global perspective piece, but I really do think it's critical and fundamental to the society as well. We clearly know access to innovative, effective treatments like IO for example, across the globe is very sparse, particularly in many parts of the world where ultimately there may be some financial challenges in getting so, and we need to equate this to make sure patients who benefit from this have access to this, but we're only going to be successful in doing so if we take this on as a global brand and as leaders from across the world in doing so. And along those lines, I do think that that requires strong partnerships. Partnerships not only with societies, but partners with leaders and people who care for these patients across the globe and developing, as I was mentioning earlier, some probably prospective registries of patients in these disease sites.

We clearly need to raise the bar every time I give a penile cancer talk, which is an area of focus of mine. I'm always somber by looking that the outcomes for advanced penile cancer have not improved in 15 to 20 years, just because we still don't even have a fundamental understanding of the efficacy of systemic chemotherapy in patients with bulky nodal disease. And I think truthfully, that's really not acceptable in our current day and age that we still have these fundamental questions which we can't answer. Last but certainly not least, these are my information resources and I'd also like to highlight Rare Cancer Day, which we're involved with. We also have some efforts and initiatives with the WHO related to rare cancers, which we're very excited about which [inaudible 00:17:53] is leading on our behalf with a society. Thanks again for your attention.