Chordoma Global Consensus and Guidelines

And, uh, after that, you know, we decided to put out any media to all our clients for friends around the world to our Notice that at the time the story was not yet discovered, and the cruisama foundation was, uh, uh, not there at all. And the feedback that we see from our colleagues were only, uh, we cannot use doctor BC. So I felt we are heard that getting back to Chesarin and telling team that we basically have to. Of what has been a treatment, uh, potentially active as a need for, uh, for games. And instead of, uh, uh, complaining and, um, telling me, oh, this is unacceptable, I remember that the communication was, uh, I'm so happy that you ask all our dear friends around the globe to the please, I know that I'm not missing anything. And from now on. And we will run a common journey to try to improve the knowledge and achievement, uh, of these, uh, disease that I know is very rare. And for me, the, the history of consensus document and meeting starts really from here. Every time you have to face a very rare condition, uh, it's so important at least to know that you are not missing anything. The fact that can be given professional is given, and if there is nothing to be, to give, we at least try to work together to improve growth to the So, uh, together with a meeting. We have some conferences in Europe, and within the framework, uh, prayer factors And, uh, product was one of the, uh, protests of the chains that was, uh, they can put on the table. Uh, and this is extremely rare. Now we know that this is Ultraria, the NBA belongs to those groups of cancers who are based on chain program. This is what we call Ultraria, uh, cancer. And, uh, uh, we have realized That the variety, uh, usually brings to a very high level of uncertainty and, uh, inconsistent inconsistency in, uh, the treatment that are offered to patients, and this translates into, uh, optimal outcomes because, uh, OT offer is not always the best. Also we, uh, very material art that we work with cancer from now you need the collaboration of different, uh, uh, specialties. Uh, you cannot have geocrologist alone or geocrologist and the surgeon alone. And it is, uh, this, uh, much complexity to the process. Uh, then, uh, we decided that we, uh, felt the need To reach a global consensus on what was at the time, what is now, the best approach, clinical approach to the disease. And the aims of this kind of initiative are several. The first is to establish a common language. Maybe patients always believe that doctors speak the same language, but this job again The definition of what is the margin, what is the y margin, what is the gun for pay surf transition just to give an example is not that obvious. And we support us to sit around the table and define what is the name of each board. We want to understand what is the best way to free condition. That's the way with this kind of initiative we can, of course, want to understand the clinical approach. Defined clearly work, we can agree, but also the next work we cannot agree. There are the conditions in which doctors do not agree on what should be the fact, and this is the basis for treatment, uh, for clinical studies, for investigation that can, at the end, provide results that are further to align us and the approach to this form So it's very important in this kind of exercise for ILIS whose RP, uh, open questions and also to identify what asked is with most urgent priority to a website because we cannot answer all the questions at the same time. And finally, as, uh, was pointed out, uh, by, uh, these kinds of the option rates are very important because can serve and, uh Basis again, based to discuss with the pharmaceutical companies, with, uh, regulatory agencies, with all, uh, stakeholders that are involved in, uh, development of new treatments to, uh, show that the community, even though the disease is rare in the literature of disease compared to common cancer, Is taken common good game. These are a consensus document, our guidelines are, uh, established. Uh, usually it happens that, uh, you could, you're organizing a consensus meeting, a consensus conference where we, uh, call all the, uh, Cosoma experts. Uh, we try to have a representation of all the DCPs that are able to get treatment of the disease or at any stage of the disease. We try to cover all the, uh, areas of the war. We try to be global, and we, of course, gonna have a degree representative operation in Europe because they can, um Make a very, very formal comment and they can bring a voice otherwise, uh, it's not present, does not allow regular losses. The starting point in the literature review, meaning that we are talking of evidence-based guidelines. Evidence-based means that the statement, uh, the what we require is Supposed to be done in a patient with the first hour should start looking at what data we have in the late rush. And for example, the last, uh, uh, the census, uh, document and requires the review or hundred of papers to get to, uh, the statements that we now have available. Then we organize working groups based on the different capacity for the Pathology working group, the oncology, medical accolades working group, various college working group, oncology working growth, and all in working group start drafting their contract, meaning that the chart is somewhere either, working bad shift and approach, workloads, the whole agreement on in the agreement that there are. Then Uh, we, uh, organize an expert meeting where we discuss usually the most critical, uh, formation, and of course, we approve everything else that is agreed by everyone. And we also define all together according to a scale that is, uh, um, already available and used for other governments, what is the level of benefits? Means what literature we have to support a given procedure, a given statement, approach, and the work given level of recommendations. So the doctors are asked to say, is this strongly recommended, uh, or, uh, you know, uh, not that strongly recommended? So every statement come out with information that are very support and staying consideration afterwards in a cash realization. So the patient acts early with a weekly strong word as this is highlighted in the document. Then we will create after the meeting a standard document for final consideration and comment, and eventually the paper is submitted for me. The history of the consensus meeting about program started in 2013, so almost ten years after I met with my patient, Chegar. And the proposal was made by the European Society of Medical Oncologist that like the FCCM regularly organized meetings for At the time, the ENO, I mean the European Society, was organized the update of the guidelines of FreeClass. com in general, and I like the proposal of organizing the workshop by the programma foundation that was at the time there, to discuss more in detail about programma and This is the first meeting that, uh, within the business study title that was at the airport in Milan, not a very function place. You can recognize some places over there, uh, like Dr. Milana, Josh, and some others. Uh, and uh, uh, the discussion was very fascinating and was a very, very funny talk. And I like a lot of Open question that, I mean, couldn't add into a common agreement because we needed the response. This recovery was about us to approach primarily and ecostatic, uh, for Domas, and the document was just published in an important journal, which is Larry Pythology. With a contribution of forty, uh, coke workers from, uh, twelve, uh, countries, uh, representing, uh, um, all the districtes that at the time we thought are relevant to fitting the disease. Uh, we, uh, for the meeting that the group was very much, that was the only the starting point. And that our goal will be to continue this collaboration and the update of the guidelines. The document was dated into a paragraph in the EPOCA, and this was very important because for the first time, such rare tumor found displayed on full paragraphs in a guideline that covers almost a hundred different kinds of tumors, and not all tumor Have such a specific paragraph. The decision that we also, uh, took at the time was to translate the document in the live version for patients to make the same content exactly the same. We are not changing the content in the live version, uh, in a language that can be, uh, easily, easier, uh, understood, uh, And for me, this, uh, uh, is also an opportunity Mexico may have this paragraph to, uh, remind a very important person, uh, Frank Kelvin, who is a European patient from, uh, uh, Netherlands who was very much instrumental in, uh, establishing the bridge between the US and Europe. Uh, then, uh, the document, the live version professionals, the Shannon already, um, yesterday was translated in so many different languages. And as a medical oncologist, I can assure you that this line version of the guidelines is the most important document to spread Uh, the, uh, treatment, uh, uh, the right approach that we see is for a lot of patients, and we all bring this document to everyone, medical oncologist, gender transitioner, meaning it is not only for, uh, educating patients, but it's also for educate physicians. Many physicians all around the globe are told working the core tomorrow Thanks to this document, even more than thanks to the scientific quadratic publisher of the language on project. So we should have really a major role in that. Then we organized another meeting in 2013, and also in this case, in addition to Josh that has, you know, gone there as old as the time I can see that. In collaboration with another patient. And again, this is to say that without the support of patients, we really are done. Your role is so much important. The meeting at the time decided to, uh, focus on the approach to regional, uh, res, and with another important for the quality of life and support to care. So we realized that paying Uh, as a fact of the treatment was something very often ignored while the invented too much that can last for years and where surgery, radiation, chemotherapy can bring, uh, such an unknownity. Again, the paper was, uh, uh, published this time move from forty to sixty authors, so the community en large and we capital for view of practice use of of the document. Again, the document was translated in a paragraph in the year in the European guidelines, and it was taken that also in the new line direction that document for for patients, uh, that You can find on the low side. And third meeting was about the definition of, uh, surgical margin. As I told you before, looks like should be obvious, but it is not at all. And if we want to look at OPS 3, when it's important that we try to bring all the surgeries around the table to discuss outings they achieved in better quality, uh, surgical early lecture. And finally, we had a last meeting in June 2025 in Milano, uh, to update the first document because, uh, because many years, uh, have passed, and there are many news to bring, uh, uh, on a local scale. So we decided, uh, uh, to focus on primary localized program only. So we didn't focus as all of the status easy locational, uh, relax. And this time, we could import more than 150 authors, uh, of course, from all the district and, uh, from more than 20 countries. This is a very, very important, uh, work about this process. Uh, the government, uh, starts with an introduction, and what is made clear in this last version is that What is not catch again, uh, in the new document has to be taken from the old one. So the key old one is not a particular part, it's updated, but it's still there, and this is very important part. Then, uh, there is, uh, uh, the paragraphs about the pathology and molecular, uh, biology, and what is now made very clear That, uh, we want as much UA Smart U1 assessment for all stations, uh, with the Modifas. Uh, then, uh, you have, uh, information on, uh, derivative assessments for the parallels out that, uh, MRI is usually the best approach to consider. Then there are the general principles, particularly we want wanted to put in the first growth that, uh, supportive, uh, Uh, treatment is very important. Then we address by another purification of the treatment of the disease, considering changes in the surgical and management approach. We have a paragraph on international radiology. We have, uh, a paragraph on, uh, uh, pediatric, uh, cordon. This is covered in new techniques consideration that polyferation At the time and change that it was not even described, just to let you understand how much what we know, uh, is improving over the year. There are communications about the flowers, about, uh, the, uh, supporting care, and of course, they are, uh, information on the future perspective. Every, uh, testing is clarified by the flowchart to make seen for the To understand what should be done in every condition, and also that is now published in a manuscript and another very important for the college that is the Jama oncology. There is a summary, the table that summarizes what are the most important changes compared to the private version, and the program Nation works so hard to make available a few days before this conference, the language version location on the website. It is not in English now, but we, of course, gonna spread it out all around the world, and for that we need a new translator in the language to have adding Spanish, the Italian, the Chinese and What is next? Of course, we needed to update the guidance on the other, uh, clinical tests, so locational direct, the starting disease, to work as a document that can focus even more on the pediatric on media program, and of course, we needed to answer a lot of open questions. And for that, let's do her for the discussion. Finally, we know that the access to, uh, single child, sorry, to, um, systemic treatment is, uh, uh, not homogeneous around the world, and uh, there are so much group loss to focus on the sharing because we know that that project can work. And so we're gonna work with the regulatory agencies to try to make them clear to me, and that we need to share. And this touch of the upload as sorry. The discussion with the regulatory agency staff over the year as we go here on the first meeting and FDA and CNA. The last alone that today is growth in our youth room, uh, with the ESP FDA representative, having a context document in the Very important school for institution for the discussion because otherwise they think that there is not a standard, there are no common, uh, things in approaches, there are no shared ideas on what is best to do or not. And, uh, uh, I think that aside, uh, uh, we have a very good feedback. They open the door, but does not mean that the work is finished. We have just But it's clear that we can find a result. We can find something that can on one side see the expectation of the regulatory entity, but on the other, uh, can, uh, you know, make, uh, uh, patients and also patients, uh, access, can, can give us access, uh, to, uh, uh, And with that, I wanna thank you, and I wanna, uh, thank, uh, for everyone in the presentation of the office for all of the work he has done and, uh, for its smartness. For me, this is another very important editorial that we made, uh, trying to say that this particular keeping without any data, any information In our cardboard, uh, as a pride of, uh, uh, in our college. Uh, so again, thank you, and I hope for the goal is Dr. Marshall.