Pediatric Chordoma Network Presentation

Next we're gonna hear from Dr. Lincoln of Pediatric Oncology Grant in U. S. National Patient Institute. Dr. Baker studies where technology versus children, adolescents, and young adults, and is one of the world's leading, uh, experts in theaters. She feeds the National Gaussian Institute's annual photo study, which brings patients and families, um, to the National Institute of Health. Political center, and as a mayor in which we receive personal guidance from Ferdoma experts around the country, and she is also a member of our mental advisory board and an essential partner in our work with a little more connected approach to pediatric Ferdoman Care as the chair of our pediatric Ferdoma the Emperor. Please welcome right. All right, thank you so much, everyone, and particularly to the Cordella Foundation, and really specifically, uh, Cabalarie Kimberly think that she is really one of the big power forces behind the Piatric Cordova network. So really want to make a call to her because about her dedication, um, just would have not been a full reality. Um, so again, I am Mary Vincent Byton. I am a PS oncologist, um, and to have a true passion for, uh, researching Cordoma, but specifically Packer Cordoma. So, you know, we all know that Cordoma itself is very rare, but then when we bring it down to age, as we'll go to economic age is, you know, the 50s to the 50s. So when we bring it down to age and think about our PS population, that makes the incidents even rarer. So it is, you know, something that across the entire world, there are some PS pharmacologists that will have never seen a case ever in their career. And what we do know is that children are just not all the old. There are massive differences. This is why we have pediatricians and, you know, internal medicine, PS oncologists, visual phonologists. And there are a lot of different factors to think about when we have a PDF patient. They have growing bodies, and we have to think about all of those aspects as we're thinking about the treatment for these patients. They still have a very long decades and decade code for rights to live. And so what are the cases of those treatments that we are providing to each patient? There could potentially be different biology. Do I think that, uh, there is not a lot known? About PSOM, but there could be entirely different biology from the original porozoma in the help of digital chordoma and pH conditions. And then specifically, there are rare subtypes that are much more common within the PDF populations, specifically early differentiated chordoma, which is PDC, you know, sorry, and de differentiated chordoma, which is, you know, just rare in general across all the patients. And as I mentioned, here is still that is so much left undone. You know, it is, you're looking at an ultra rare tower, it's hard to get an understanding for the adult life space. And as we are starting to make progress on adult conventional fur donors, you know, there is now a need to start focusing on the peak effort for donor because the kids so much that is undone. You know, I already mentioned there could be different biology. Something that happens in adults could be different that happens in the child. But we don't know that. It could be the same, but it could be different. And so there is still so much that needs to be learned, um, and really looking at how to diagnose, treat, and to really follow these patients' process. As Shannon mentioned, um, I do run a PF or in April Clinton clinic at NIH. But that's the NIH. It is held on to here. Um, you know, we are able to bring in experts from within the United States. We're able to bring in patients because they virtual options so we can have even more specialists, even more patients. Again, we only have such online time within one day in one year. And so, you know, whatever we're able to reach more, whatever we're able to get those families to the growth network in more real time so that we can actually help these patients that have the exam. And this is where the thought of the network really came from is the ability to bring experts to the families when their patients looking at them and saying, I've never seen this. So this is where I have the PISP for learning that came from is really bringing a worldwide community of specialists and reason. And families to really focus on children and to allocate the young adults with for telling us. So what we are really trying to do with this effort is to get experts all together to work collaboratively with families and we see other patients in the adolescence. To really kind of drive clients forward, we want to, um, you know, start researching specifically to person, but we also want to make connections between families, you know, indeed at an extremely lonely place when you think you are the only person that the position ever seen. So there are the other people, where are the family? One of the very exciting things is, um, the introduction of these virtual tour boards that we are getting together. Um, you know, these will be, um, tour boards to really bring in the expertise to these families so that decisions can be made to help, um, make So essentially how the virtual team report works is that a positioning report namely can submit a ability to upload scans, they have the ability to give us the records. Then we bring people from all across the world together into a virtual space. And we go over all these cases. We go over the frontal reports. We go over the engine. And then we provide guidance. And again, this is one critical point about all of this is, you know, then we are, uh, away from these patients. This will be virtual. And so you, as the, you know, the, the family that we're speaking to or you as a physician, you know, you will. Know the case the very best. And so we are providing is guidance from our expertise as to options to move forward. So what does what do all of these specialists look like? Who will be in that room during this personal tour report? So we will have radiologists to help us with the gas. As much as I have a gallery physician, I am not a radiologist. I very much rely on all of my radiologists to help me See everything. So radiologists, pathologists, to really make sure that what the path football is saying from any version of the world is actually what we think it is. There are a lot of patients that also do get mixed diagnosis because don't want to be given a treatment if the biologist is not. We will have ontology, specifically psychiatric oncology, so that those that have been trained in that field are there. We will have radiation oncologists, those that have been trained specifically and psychiatrists. And then also all of the surgical specialties, so thorough surgery and team. If there is a final or chicken case, then we'll show those. And this is a way that we can really have all the experts on a child, no matter where you live. And that's the very nice thing is, you know, it's not just the United States that patients are being diagnosed. It's happening all across the world as the tumor boards that people have, um, We will have them run about types of months, have one in the morning, one and late at night, so that we can make sure the effort can be therapy across the world with sufficient therapy cases, um, and plus these presentation also is present. Um, but this way we can help your patients with And the other piece is, you know, we really are thinking about the families in this. You know, we want to have, um, feedback from the families and from the parents and the patients themselves, um, to really help shape what we move forward with and how we improve. Our PM portal network. We also, um, you know, one, the, the big first initiative is this, um, virtual tour board, but the vision of this PF Proponent Network is so much smaller than that. Um, we have a goal to have my repositories, we will have estimates so that those across the world will be able to specifically Tacker conditions for that, Diverity Prozona, quarter recentry for that. We will have the guidelines that are protected at multi effect population where the platforms with which physicians have educational skills and And things like that. So putting out information so that it is more readily available to those physicians, um, and to just the general public. And then, of course, you know, continuing the application support, um, for all of our, you know, patients. And, you know, the goal is that this is just a starting point, but that we will continue to growth year and that you know we will really come together as a community um and make this a group equivalent network so we are all involved together and you know the the last big thing is you know I think I did to this from the beginning is you know we have a job new child telling them that they have this diagnosis That is a goal of things, and that is the whole goal of this. Is I never want anything to feel like that. And so this is the true period. Uh, the effort is to really make everyone feel like they are seen and they are audience, but there are all people that you notice, and that we do know how to treat, uh, there are funding that makes And