Wonderful. Welcome, everybody, and thanks for joining us today for our special session on how we can use clinical registries to help with understanding more about COVID-19. So, these are just some quick Zoom tips and tricks for you about muting yourself when you're not speaking, and then a couple of things about how to chat, hand reactions, raising, all that good stuff. What we're going to do is we're going to walk through each of the presentations first, then going to open it up to the group. Feel free to use the chat. Julia and I will keep an eye on the chat, calling you if you want to make any comments. We should have a good amount of time for questions. And with that, let's go to the next slide, Julia. So, what we're hoping to do today for our session today is really launch this new webinar series that CMSS just received support from the Gordon and Betty Moore Foundation to work on, specifically focusing on how we can advance clinical registries to support COVID-19 pandemic treatment and response. We thought, given the fact, as you'll see very clearly on our presenters today, that there is so much collaboration happening already between specialty societies and academic health centers, we thought it'd be important that we do this in collaboration with the AAMC. So, Janice Hrolowski, who's on this webinar with us today, will be my partner in crime as we help plan the next probably four to six webinars that'll come out of this initial discussion. So, next slide. So here are our presenters. In the order they'll go in, we're thrilled to have this remarkable group of folks. First up will be Cliff Koh, who's the Director of the Division of Research and Optimal Patient Care at the American College of Surgeons. He's also Vice Chair and a Professor of Surgery at UCLA. Followed by Edda Pisano, who's the Vice Chair for Research. There's something. Oh, slides are moving. Sorry, I can't see. There we go. Vice Chair for Research at Beth Israel Deaconess, and she's the Chief Research Officer for the American College of Radiology. We'll then hear from Janouse Yazdani, who is the Chief of the Division of Rheumatology at San Francisco General Hospital and the Director of the COVID-19 Global Rheumatology Alliance. And then Esther Friedman, who is the Director of the MGH Global Health Dermatology Group and the Director of the new COVID-19 Dermatology Registry. And then in wrap up at the end, after everybody's presented, Janouse will come back and give us some of her thoughts on their perspectives more from the Academic Health Center perspective. So, our goal for today is really to hear some early lessons learned from our presenters, and then we will take it from there. So, I guess, actually, first up is Dr. Yazdani. Please go ahead. Thanks so much, Helen. Thanks for having me today. So, I'm going to just in the next five minutes or so tell you about the COVID-19 Global Rheumatology Alliance Registry that was just stood up over the last few weeks. Next slide. So, the CDC and other groups have identified risk factors for poor outcomes for SARS-CoV-2 infection. And a lot of these will be familiar to you. They include things like cardiovascular disease, diabetes, hypertension, really a lot of the comorbidities that come as people get older. And although the CDC includes immunocompromising conditions, we actually don't have definitive proof of that. And so, there's always an asterisk in these recommendations saying that there's not enough data. And that was really the impetus for beginning these registries so that we could start to answer these questions for our patients. Next slide. So, as of today, this is the sort of the world literature on rheumatic diseases and COVID-19. And the third column is sort of the size of these case series. And you can see they range from about one patient to 89 patients. And, you know, from this very early data, it looks like a lot of the risk factors for having more severe outcomes with COVID-19 infection for people with diseases like rheumatoid arthritis, lupus, psoriatic arthritis, are similar to the general population. Things like hypertension and comorbidities. But it's very hard to make inferences about specific drugs with these smaller case series. Next slide. And so, this is really the reason for starting this COVID-19 Global Rheumatology Alliance. We had two main questions. The first is what are the outcomes of patients with rheumatic diseases who get COVID-19? And can we make any inferences about immunosuppressive or antimalarial drugs? Now, this last part is really important because rheumatology is a very small specialty. But we've obviously been in the news a lot over the last few weeks because we are the main prescribers of drugs like hydroxychloroquine and many of the biologic medicines and sort of new immunosuppressants that we use like tocilizumab and baricitinib, the TNF blockers and others are candidates for actually trials for treating the intense inflammatory response that is thought to be part of what's causing problems later in COVID-19 infection. And so, we really stood up two registries. One is a physician registry and one is a patient registry. And I think part of the reason we were able to do this so quickly is because we had a lot of infrastructure with the work that we've done over the years with the American College of Rheumatology to develop our qualified clinical data registry and the work that we've done at academic medical centers and developing various types of research projects. So, the physician registry is for really rheumatologists around the world to enter cases about their patients. And then, you know, I think a really important part of this initiative is also a patient registry. Our patients are very frightened right now. You know, a lot of them are asking their doctors, you know, I'm immunosuppressed. Does that mean that if I get an infection, that's going to be the end of me? And so, we actually started this registry in partnership with patients. It's actually driven largely by a patient board. And they are asking the questions that are important to them. And sort of disseminating the registry through the patient networks globally. It's really a really inspiring effort. Next slide. And I think the other thing about this is, you know, I think this will probably be a theme, but these registries, you know, were stood up in record time. I've certainly never seen anything like this in all my years doing research. But we started with a Twitter conversation on March 11th where, you know, our inflammatory bowel disease colleagues had started a similar registry. And we started to talk about it on Twitter. And then two days later, we launched this alliance. Four days later, we had UCSF IRB approval for the registry. And then a week later, we launched this global survey. And then, you know, a few weeks later, published our first cases. And so, I think it's just an illustration of how the scientific community is really energized and trying to do what they can to help during this really challenging time. Next slide. So I think one of the things that has been really inspiring is that I think from a very early point, we realized that we didn't want this to just be a U.S. effort. Obviously, the pandemic is having far-reaching effects across the world. And we wanted this really to be able to answer questions across countries and be generalizable. And therefore, sought endorsement by organizations around the world. We have 288 organizations that are supporting the effort in various ways across all six continents. There are over 300 investigators working on this and obviously the entire rheumatology workforce. Next slide. So we just passed actually 1,000 patients in the registry today, which is amazing. We're in the process of having the first 600 case series published. And these are just some early results that I can share with you. We see that there's more hospitalizations among people who are older and have comorbidities, which is not surprising. But there are some unique things, like it appears that being on steroids, especially at higher doses, puts people at risk for poorer outcomes. We're also seeing some interesting signals with some of the biologic medicines that we prescribe in rheumatology with fewer hospitalizations among some of those drug classes. And obviously, this is not a randomized controlled trial and we can't make causal inference statements. But certainly, these observational data are really important for a variety of reasons, including planning for randomized controlled trials. I think the other piece of this that has been really important is that there's no significant association between hydroxychloroquine and hospitalization. We have many patients who are on chronic hydroxychloroquine and don't see a relationship with outcomes in these early data. Next slide. So just my final thoughts here. Global cooperation has really enabled us to gather cases on relatively rare diseases and COVID-19 infection. I think the timely data has allowed us to rapidly dispel misinformation about some of our drugs, including hydroxychloroquine, statements about people with hydroxychloroquine not being at risk for infection or people with lupus not getting COVID. I think this data has allowed us to really engage with the media. A lot of the work has been represented on NPR and CNN and many other journals. There's a link at the bottom if you want to look at the website and see some of the press. And I think very importantly, we've been able to reassure patients that actually most people who are immunosuppressed with rheumatic diseases are actually recovering from COVID-19. And I can't tell you as a doctor how important this is because I think there's an instinct among our patients who are very worried to want to stop their medication. And obviously that comes with a lot of risk of having a flare-up of their underlying disease. And I think we now have enough evidence to say that drugs should generally not be discontinued, although there is caution required with moderate or high-dose steroids. All right, so the next slide. And this is just really just an acknowledgment of what an incredible effort this has been. We've been having Zoom meetings across every possible time zone with many, many people contributing and just wonderful support of professional societies, especially the American College of Rheumatology and also the European League Against Rheumatism. If you want to follow this project along, we have newsletters and Twitter feeds and every other thing. You can see the links here. So I'll stop right there. That's great. Thank you so much. What an exciting, amazingly rapid effort. All right, we'll take questions at the end once everybody's had a chance to present. So Cliff, I will turn to you to give the American College of Surgeons presentation. Great. Well, thank you so much. Good afternoon, everybody. First of all, thank you to CMSS and Helen for putting this together with all the funders and supporters. This is really a terrific grouping of folks on a lot of different topics. I think that in this pandemic and after, one of the things that we find is, as I think all the speakers are going to say, is that with this lack of data and we're flying blind, it's been really unsettling and a lot of guesswork and a lot of non-scientists talking about science and whatnot. And the more we can get data and science together to kind of help to move forward in a reasonable, logical, and correct way, the better. And so there's lots of questions we're learning every single day. And what we're seeing at the college is that as we're working with hospitals and providers of patients undergoing surgery, not so much during the pandemic except for emergencies, but now that elective surgery is happening, how do we do that safely? How do we do it high quality? And how do local places in the midst of high prevalence, low prevalence, whatever testing they have, whatever patient mix they have, whatever diseases that happen to be a cancer center or a rural place, how do they do that safely? And so the college has a long history of measuring and having quality programs. And so I'd like to share with you in the next five minutes, some of these things that are ongoing. So Julia, may I have the next slide, please? So the college has a four-part model for quality and includes number one, standards and setting standards. Number two, making sure that infrastructure's in place surrounding the operation, whether it's inpatient or outpatient. Number three, the third part of the model is data. And number four is verification that the standards and infrastructure and the data are being used appropriately. The college has seven registries and has a footprint in about 3,000 hospitals in the United States. The first program, NISQIP, is in 12 or 13 different countries, but the rest are largely focused on the United States. And you can see the list here. The seventh one, the COVID-19 registry, something new that a lot of our hospitals, and these are hospital-based. They were asking us that we don't know what's going on with our own patients and we don't have a way to do that. And so in the midst of it, in rheumatology, and I suspect a lot of the other registries, that very quickly something came together. And I'll share that in the next slide. May I have the next one, Julia, please? So, again, with a lot of requests from hospitals, especially coming out of New York, asking, can we help them with a log for their cases, because they were not able to get it so readily out of the EHR or anything else, we developed something very quickly to collect information on all COVID patients, operative or non-operative. And most of them were non-operative, most of them were non-operative, but there are some that had, again, emergency or urgent operations. It's free for hospitals to participate in. It is hospital-based. It's IRB approved. It is international. We now have hospitals participating from outside the United States. Variables are very high level demographics, presenting symptoms, comorbidities, treatments, outcomes. We just asked the doctors and workers in these places, what would help you? And we got the list together and put it together. More information on this is on our website. Hospitals are signing up that day and then putting in data that day. So it's pretty easy. We want to make it very streamlined to do that. So may I have the next slide, please? Beyond getting kind of the high level COVID patient data like that, we are finding that surgery in COVID patients is, we need to get more data as elective surgery is being resumed in the United States and largely other places as well. Literature from outside the US shows that there are higher complication and higher mortality rates in a very substantial way for patients who are COVID positive. And so there are patients who we know are COVID positive that have an urgent or emergent operation that's needed. And so maybe not much could be done with that. But as now, as the United States is opening up, there are patients who are asymptomatic, who screen negative, who test negative, who are then found to have COVID afterwards. And their complication rates are tenfold. Their mortality rates are reportedly almost tenfold. The use of ICU is two to threefold higher. And so there are a lot of things that we need to know about this because how do we really ramp up and resume surgery in kind of this environment? And these things reported from outside the US are now starting to be seen in the US as well with publications coming on board. May I have the next slide, please? Excuse me. So the ACS registries are adding COVID information into the registry. So NISQIP is a risk adjusted outcomes database, which I'll actually go into a little more detail as an example. We have a trauma database, bariatric surgery database, as an example, pediatric surgery. And they're going to provide data that they usually provide in terms of measuring safety and quality issues of operations. But they also support guidelines. And what we found in this pandemic time and still that we're putting guidelines, recommendations, or things for frontline people, hospitals, and wherever they happen to be, to consider as they're working on opening up and providing safe, quality care to their patients. Of course, in this case, for surgery and the surgical patients. Next slide, please. So what I'd like to do is go into a little more detail of something that we think is going to be very helpful for the collaborative fields of all the surgery fields together. So NISQIP is the National Surgical Quality Improvement Program. It was established in 2004. And it's basically one of the most accurate registries in the world for providing risk-adjusted outcomes. It's multi-specialty. So general surgery, orthopedics, neurosurgery, urology, thoracic, and so forth. It's inpatient and outpatient operations. Again, it's the risk-adjusted 30-day outcomes like complications and mortality, but also other things. We have put in COVID-related variables so that now we can start to kind of look at the cases and the controls and start to evaluate and benchmark against those things. Again, multiple countries and almost everywhere in the US. It's been used a lot for a lot of quality pieces, but also publications. And so with this, an established registry in hundreds and hundreds of hospitals allows us to gain an experience that is going to be very important as we resume whatever normalcy is going to become, ensuring that we can do it in a very safe way, both for the providers and for the patients and for the hospitals and kind of the whole field moving forward. Clearly, kind of in how Helen organized this is that a lot of the data from all of our registries will be need to kind of learn from each other. And if somebody goes forward and needs knowledge in rheumatology for treating these patients who happen to be positive and whatnot, how do we put all these things together? I know that for our patients and our surgeons that they don't know if as they ramp up, as an example, should they take their highest risk patients and bring them to the operating room? Should they start with their lowest risk patients? How do they prioritize them? Should we isolate them two weeks before we bring them in? And if they test negative, negative, should we still isolate them? And what goes forth from there? With a lot of our specialties, we know that there's going to be post-acute care. How do we predict and how do we bring those patients forward? There's a lot of things, again, as we open up elective surgery. Next, Julia, please. This is the last slide. These are some of the quality programs, but all of this information is on the college website. There's a lot of information there in the COVID realm, but these issues and others can be seen at our website. So I'll stop here and thank you very much for your attention. Thank you so much, Cliff. Really remarkable to see the speed with which all these are launching. All right, Julia, next slide, please. And we will go ahead and introduce Dr. Edith Pisano, who is the Chief Research Officer at the American College of Radiology and also a Director of Research at the Beth Israel Leahy Health System. Boy, the names keep changing since I left the Brigham. Welcome, Edith. Thank you. It's very nice to be here. Thank you for including us. Next slide, please. So I'm going to talk about the registry that we're setting up, but I want to make sure I let you know at the beginning that this is really a multidisciplinary registry. We are the American College of Radiology. I represent that group today, but we already are collaborating with Pulmonary Intensivist in a project sponsored by the NHLBI called PEDAL. It's part of PEDAL, which is called CARL for COVID. In addition, we have a collaboration already that we're working on with the Society of Critical Care Medicine, which runs the ERs and intensive care units. And so we're working with them as well. And thirdly, we have a collaboration with NCATS, which is the CTSAs. So our registry is really multidisciplinary already. In addition to multiple radiologic organizations, including the RSNA, the Society of Thoracic Radiology, the Society of Emergency Radiology, and the American Association of Physicists in Medicine, I can't mention everybody else. I mean, it's just a big multidisciplinary group. And I'll just say that others are welcome to join this effort. I'm going to give you my email at the end if anybody wants to be part of what we're doing. We're trying to pull together multidisciplinary data. Next slide, please. Next slide, please. So just in the background of this is ACR's previous experience with registries. The one that just was published was the evidence for amyloid scanning. It was a public-private funded partially by the agent developer, the amyloid imaging agent, and publicly by federal grants. And that was just published in JAMA. And this is basically, we have a broad experience in that. We have actually 40 ongoing registries. These are ones that were funded specifically for research. DCAMP is another one that was done specifically for the discovery of biomarkers for COPD and other lung diseases. And military personnel is funded by the Department of Defense and Pharma. And probably the one that has had the biggest impact and was existent for 10 years is NOPR, which was developed to prove that PET scanning actually works for use in oncologic illness and led to Medicare deciding to pay for PET. So these are some examples of previously funded registries and very large ones. Next slide, please. So we have some other efforts that we've just stood up. As I mentioned, this is on the background of 40 standing registries that are there, but mainly for quality and safety. We actually have recently stood up a bunch of research-based registries only. And I'll just focus on, I'm not going to read this whole slide to you, but the second one listed there, the Thyroid Nodules Ultrasound Registry, is being led by head and neck radiologist, Adam Hopkins, Dr. Jenny Wong. It basically involves six sites and 40,000 records were accumulated in a two-year period. The way we did this, and you can see the funding there, but the way this was done is passive listening into the EHR through an HL7 feed with active cleaning afterwards. So you can accrue many, many, many, many more people into your registry if you use this kind of system. And we have been using this kind of system for a long, long time. Next slide. Next slide, please. So we have a big staff, which are all externally funded on a bunch of different federally funded projects you know about. I'm sure many of you have heard of ECOG, Akron, NRG, IROC, and NCORP. We are actively involved as the imaging collection repository, and we support the data side of many of their grants of these groups. In addition, we have a big IT staff. So because of that, we're doing sort of cutting edge data collection is what I would say. It's not doctors sitting down and entering data or staff sitting down and entering data. It's really more passive data feeds that allow us to pick up clinical information directly from the EHR, of course, with permission of the sites, and of course, linked to the imaging record, which is our primary interest. But because of that, we have the capability of really helping other specialties amass data in a relatively rapid way as opposed to entering data in a form. We do have that capability as well. That's the way most clinical trials collect their data is an RA enters data into a form, and it gets uploaded into a database. But this is really a more passive process, which allows many, many more patients to accrue more quickly. Next slide. Oh, and the last thing on that last slide is I just wanted to mention, this is what's being used for national lung screening right now, and also for the National Mammography Database, where we just assess quality in both lung cancer and breast cancer screening. So, you know, and the system we have includes the handling of a million medical images a year for various applications. That's because we have a piece of software called Triad installed in 18,000 U.S. sites and all over the world as well, but 18,000 in the U.S., and that allows anonymization of the images and uploading them, plus other documents, if you will. So, and it's an image upload system, but it can be used to scan and upload other kinds of documents like EKGs, and it is used for that purpose throughout the NCTN network, which is the National Clinical Trials Network of the NCI. So, we're converting that Triad now. We're in the process of moving over to a new piece of software, which will have increased functionality. It's based, what that will do, it's called Connect, and it will allow sites to keep the data on premises. And, you know, that will allow sites to control the data much more carefully and decide which projects they want to participate in. So, this is something downstream for what we're doing now. We have it installed now in about 15 sites, but we're accelerating the installation of that so that we can have a more federated model of data collection, meaning the sites wouldn't have to give up the data to put it in a central data lake. We can actually, you can actually access it on premises. That'll help provide more cases for machine learning and AI. Next slide. So, I mentioned this already. I just think it's worth repeating that there is a scalable way to get more data in. And so, our new registry for COVID really includes, and what we're providing to both of the groups I mentioned previously, the clinical collaborators, is the passive data upload so that a person doesn't have to sit down and enter data. It can actually be uploaded and then cleaned afterwards. In addition, we're planning to extend the capabilities to other collaborators if they're interested. And, of course, we'll tailor the IT solution to the project's needs. Obviously, radiology is a piece of this, as we are the American College of Radiology, but it's not the only piece. We really believe that the integration of health care data across the boundaries of our disciplines is really how we're going to do something really great for COVID. Next slide. So, I just want to end with a little vision statement here, because I think it may seem a little weird. Why are we working so hard to make this a multidisciplinary thing instead of just something that's used to radiologists or people who want to do research in radiology? I think our partners are really bringing the clinical expertise to this. Obviously, we have expertise in the images and may help with AI in helping to develop better diagnostics for COVID. But essentially, I want to bring everyone's attention to a vision statement that was enunciated in Vice President Biden's Cancer Moonshot Initiative, which was held in June of 2016. That group talked about integrating the electronic health record and allowing research to occur. In that case, it was for cancer, but in this case, it could be for COVID. Essentially, that group enunciated a vision for how, if we could tap the potential of the EHRs, we could learn a lot of new things. Next slide, please. Obviously, this is a public health crisis, so we are really trying to achieve a small piece of this by integrating data from the clinical partners we have, including the imaging data. Essentially, it envisions human medical record data as a public health utility. Imagine if we could see across the boundaries of institutions, we might understand more rapid ascertainment of trends, especially as society reopens. It's basically, I think Dr. Koh said a minute ago, we're working in the blind right now. We don't have data. Ideally, we would know what's going on around the country, and we could identify trends by looking at what's going on in individual hospitals, rather than waiting for the hospitals to report to a public health authority. In addition, once you have such a system, you can discern, you can learn new things that are not easily discernible to the human observer. I think some of them have been described by the previous speaker, so I'm not going to go into them. I'll just give you one example for radiology, which might be doable with this kind of system. Everybody's familiar with the phenomenon of a sentinel headache with a patient experiencing a subarachnoid hemorrhage within a few weeks or months of the event. Right now, patients who have negative CT scans are sent home after their sentinel headache. A certain number of them come back a few weeks later with a catastrophic subarachnoid hemorrhage. We believe that probably there's information in the images of those people who had the subarachnoid hemorrhage ultimately get the subarachnoid hemorrhage that's distinct from those who have a severe headache that could be ascertained with AI. Of course, each institution only has a few of these cases, maybe 1,000 at most at the biggest institutions in a year, probably more like 100 or 200 is more common, or even only a dozen or so. If we could combine data across institutions and run AI algorithms and machine learning tools on this, we might actually discover which patients and prognosticate about those patients and then run a prospective study of whatever additional imaging tool we might develop to help elucidate that. That's just one example in imaging, but I'm sure everybody in the audience can think of others. In addition, once you have a virtual registry set up, you can set up virtual clinical trials. I'm a clinical trialist. I'm running a study right now that's requiring the 165,000 women in over 100 centers, TMIST. It's a screening study for breast cancer. I really support clinical trials and they provide the best information. Virtual clinical trials are also possible if you have enough data where you randomize people who are not consented, then you just randomize them and you look at the data of the people who actually followed the randomization assignment by just chance, whatever they decided to do. You look at the data, you can see trends in the data might even be able to predict hypotheses that you can test in a clinical trial. In other words, there's a lot of uses if we could find a way. By the way, all this is described in the Moonshot Initiative, which I encourage all of you to look at. Next slide. There's my email. Anyone who wants to join our effort of multidisciplinary data sharing, we really welcome you. We're not trying to control the data. We're actually expecting groups to collaborate around this and continue to evaluate their own data sets and work with us. We really welcome you and we'd be happy to help you with whatever project you're doing. Thank you. Great. Thank you so much, Dr. Pisano. We'll come back to this whole issue of collaboration and particularly multi-specialty. There's already some questions in the chat about that. Lastly, let me return to Dr. Freeman, who will give us an overview of the very, very new dermatology registry that was just launched. Great. Thank you so much. It's a real pleasure to be here and to be with this group. Next slide. I'm representing the American Academy of Dermatology. I'm a member of the American Academy of Dermatology's COVID-19 Task Force and the principal investigator of our dermatology COVID-19 registry. A paper outlining the establishment of this registry we published in the Journal of the American Academy of Dermatology about crowdsourcing dermatology in the age of COVID-19. I wanted to start off and talk a little bit about our registry. Next slide. I think the first thing I actually wanted to say was a huge thank you, a cross-specialty thank you to our colleagues in Global Rheumatology Alliance. We really reached out towards the beginning of the epidemic. We realized that COVID-19 might have skin manifestations in the skin. We also realized that a lot of our patients, similar to rheumatology, are on Biologics or on Plaquenil. We also take care of a lot of patients with lupus, for example, or with Bullis disease. We realized we had multiple reasons that we really wanted to capture cases in dermatology and not just in the field of dermatology, but really anyone who was seeing dermatologic manifestations of COVID-19. We reached out to the rheumatology team because they had already had, at that point, a functioning registry. They had just launched, I think, when we reached out to them. They were just so incredibly collaborative. I think, to me, it's been a real bright spot in a dark time on the amount of international collaboration and across specialties that has happened. They were extremely open and collegial about sharing their best practices and pitfalls and things that they had discovered when they had launched their registry. That really allowed us to launch very quickly. I'm extremely appreciative of that. I floated the idea to the American Academy of Dermatology. After we went through IRB approval, and we went from conception of the idea to fully launched with our first cases being entered in eight days. Like rheumatology was saying, just the speed at which this is happening is really, I think, unprecedented. I think, at a normal time, I would expect something like this might take about six months. Really, we're all in fast forward. Our registry is a partnership between academics and also between our American Academy of Dermatology. The data is hosted at REDCap at Massachusetts General Hospital for data protection reasons. It's a collaboration with the American Academy of Dermatology and the American Academy of Dermatology COVID-19 Task Force, and also with the International League of Dermatologic Societies. We decided very early on that we were interested in collecting cases, not just in the US, but really all across the world. It was important to us that it's not just dermatologists, but it's really anyone who's seeing skin because, of course, dermatologists are not necessarily on the front line. It's ICU doctors, it's ER doctors, it's family practice, it's primary care. It was important to us that really anyone who is a healthcare professional could enter data. It is a healthcare provider-facing registry. Unlike rheumatology, we decided for now that we are sticking with a healthcare provider registry. I think part of that for us in dermatology is that we find it very difficult for patients to describe their own rash. When we're trying to collect data, we find that it's a little bit easier for us to interpret when it's a healthcare provider that's describing their rash. It takes about five to seven minutes. It has gone through the IRB process. We don't collect any protected health information, and we're collecting a wide variety of things. I think the number one thing in most of our registry is collecting dermatologic manifestations of COVID-19, so new rashes, and I'll talk about that in a second. We also collect other information, so people who might have developed a reaction to a medication that's related to COVID-19 that we would see in the skin, or patients who are existing dermatologic patients who might be on biologics, who might be on Plaquenil or other medications, and we wanted to see what their course of COVID would be. I think what's really been interesting about this, and I don't think I could have anticipated this, we only went live on April 8th, so we're really only about three weeks in, is that there have been a pretty major uptick in dermatologic manifestations of COVID-19, and that because of the registry, we've, I think, been able to get that word out relatively quickly, and I think we're actually starting to affect testing criteria across the country, which is great. This is one piece of press that was garnered by the registry in the Washington Post, I think, about two days ago, and then just about three hours ago, the New York Times published a piece on our registry as well, so certainly a lot of interest, I think, nationally and internationally about how registries and case theories can really contribute to this very kind of dynamic and quickly moving environment. Right now, as of at least yesterday, we had cases from 21 countries with over 400 cases of dermatologic manifestations of COVID-19, but I'm looking forward to following in Rheumatology's footsteps and hopefully we'll get to a thousand cases before too long. Next slide. So another piece that we're working on, so that was our registry in particular, but what's occurred to us is that even within the field of dermatology, there were a lot of registries that we saw popping up that were for specific dermatologic conditions. So, for example, there was a separate registry for psoriasis, there was a separate registry for atopic dermatitis, there was a separate registry for hydrogenized portiva, and it was important to us that we didn't end up with like a splintering of cases or different groups that were not necessarily talking to each other because I don't think that's that helpful to move the field forward. So we launched an attempt at basically consensus and harmonization. So at the AED, we actually hosted a call that included colleagues from Australia, from Europe, from the U.S. We've since then also reached out to colleagues in China to really try to establish a more formal collaboration across the world from different groups and different dermatologic societies. Next slide. So just a list of the different folks that we've reached out to that are we're currently actually working on a consensus piece together in terms of how to collaborate between different dermatologic registries that were already launched worldwide. Next slide. So I think the main issues that we kind of workshopped in terms of what are our challenges when we have different registries that want to talk to each other is how do you harmonize? Are you harmonizing at the point of data entry so that you're going to be collecting variables in the same way? Are you going to, and we do a little bit of that. So since this consensus discussion, we've actually changed the way that we in our registry collect race in order to harmonize with the World Health Organization a little bit better and to harmonize with our European colleagues. And we also now link to different registries, which is again, similar to what Rheumatology has done, where they do a really nice job linking between countries. We've also talked about creating a common set of variables and really thinking about kind of harmonizing and more conversations about how do we then even also share data post-hoc that has already been collected. Next slide. So I think we just mentioned this, that really linking registries where we can. And then the other big issue that I don't know if anyone's discussed quite yet in this call is the issue about double data entry in registries. So what we've done is we've double data entry in registries. I think this is really important. And especially as we start to have more collaboration across different specialties. So if you are registering someone who has a radiologic finding is maybe in the ICU and then also gets a rash, you could end up with the same case in a lot of different registries. And I think that's very possible. We're seeing that. So I think that it's something I don't have the answer. I'm more just raising it as I think an issue. Within dermatology, in all of our registries that are involved in this consensus project, we now have like a little question at the end that says, is this case entered into any other registries? And then if which, so which registry? And so we now have like a little button. So we have that within dermatology, but I think it might be helpful for us to think about, do we need that across specialties? So we get a sense of, okay, this case was actually registered in a different specialties registry, just so we're somehow not double counting cases. I think that's going to be a challenge for us just in general with registries. Next slide. So with that, I just want to say thank you, and it's been a real pleasure, you know, in dermatology to be part of this national conversation. And certainly, you know, we appreciate the role of registries, I think, in bringing together different specialties and bringing together important and disparate case reports that may be geographically very separated from one another. Thanks very much. I don't think we can hear Helen. Helen, I think you're muted. I'm muted. There you go. So eloquent. You guys missed it all. Anyway, thank you all. That was incredible. It was really remarkable to hear the speed, I think, is the most striking thing for those of us who have sort of labored to do this stuff for years and years and years and to hear things happen, you know, in a matter of days. There's this expression people often use that data travels at the speed of trust. And there must just be this incredible well of trust between the current crisis across partners in ways that we've just not seen. And I hope that as part of this initiative, we can really push that forward. One of the things we'd love to, Janice Orlowski has joined us again from AAMC, who is joining us as part of this panel. And I'd love to, before we get to Janice and give her reflections, there are several others in the audience who also have registries related to COVID. I want to just give them a couple moments to speak. I know Lance Mueller from AAHPNM would love to talk about our palliative care registry. Do you want to just jump in, Lance? Yes. Yeah. Thank you, Helen. So I'm with the Palliative Care Quality Collaborative. We're standing up a new clinical registry for the palliative care field. And as the COVID-19 pandemic hit, you know, we saw the need to pivot a little bit and provide some value to the specialty ahead of our go live later this summer. So we created, again, in about two weeks with our vendor, a palliative care COVID-19 case report. About a hundred cases now in less than a month. And it's really, you know, very similar to what we've heard, just 10 or 12 questions, no PHI. And it's just really how has palliative care been affected by, you know, the COVID-19 crisis? And, you know, and then a couple of free text boxes to really get people to, you know, kind of share what they've been experiencing. Just our two quickest learnings in the last couple of weeks is so much of palliative care has moved to TELA, you know, remote and TELA. We've got people from the West Coast that are providing palliative care services to their colleagues in New York City. So just, you know, the ability for a program getting swamped and reaching out to others to be able to, you know, help support that. And then really hard to connect and communicate with patients when you're behind masks and behind face masks. And, you know, you've got the cover over your mouth and nose. So just, you know, the clinicians are expressed that it's just, you know, a lot more challenging to make that connection with the patient. So thank you, Helen, for letting us share. Our pleasure. Thank you. Anyone else? I know several of you on the line. I know ASCO, ASAP's looking at it. Ash is looking at it. So anybody want to speak to any of those efforts that are ongoing? I can. Oh. Is that you, Cliff? No, but I'm happy to speak in just a second. I just say ASCO's launching a longitudinal registry. Our goal is to look at both practice patterns and outcomes. And we've just set it up and we have the initial sites signed up and others coming along. The issue that several speakers touched on about collaboration is really important. There are multiple registries in oncology. And our plan and expectation is to coordinate using a web system, the data intake side of this, and then collaborate on the analytics on the backend. That's a very short summary of what we're planning to do. Great. Thank you so much. Saul, you were going to jump in. Yeah. APA is beginning to look to create a sub-registry around mental illness, signs and symptoms, or diagnoses, as well as substance use disorders as to how does that actually play in terms of comorbidities in terms of COVID. So it's one of the things we will be approaching some of the other registries to see if they could add in a question or two for us to begin to start doing it. And then we are finding that a number of the psychiatric units have COVID patients. And the question is at what point do they get transferred out because they're too severe versus those that are actually been taking care within the unit. And we're therefore also looking at some of the medications that they're on. And then I had one other quick question if I could, just since I've got the floor right now. I recently heard that if you're on NSAIDs, you should not, that you really do not want to be on NSAIDs and catch COVID. Then I heard the alternative side of it the other day saying that NSAIDs are good in terms of COVID. I was wondering if the rheumatologists who have their registries, had they looked at that considering they were talking about prednisone? Do you want me to answer that question now? Yeah, go ahead. Okay. Yeah, so there's a theoretical concern that because of the ACE2 receptor on the SARS-CoV-2 virus, that NSAIDs could theoretically gain entry into cells and actually cause worse outcomes. That's based on animal data. To date, there hasn't been convincing evidence that NSAIDs are harmful in humans. And we're not seeing evidence of harm in the Rheum-COVID registry either. Thank you. Great. Thank you. Marty or anybody from ASH, want to give us any insight? Sure. Sure. Very briefly, our registry for hematology sounds a lot like what was just described for dermatology in many ways in terms of the various practitioners being able to enter, but only practitioners and not to have patients. And we're trying to, as Cliff said, we're trying to collaborate with ASCO and others that have registries regarding hematologic malignancies, but then we also have a non-hema malignancy component and also standing up one on coagulopathy and would like to collaborate with anybody on any and all of those areas. And I think, yeah, someone from our registry has also been in touch with ACR after Bill offered for everybody to collaborate. So it's early days. Ours is international and I think we have about 70 cases now in the first like three weeks, but- Close to a hundred, Marty. Up to a hundred. Okay. Excellent. Thanks, Matt. Super. All right. Well, if anybody else wants to share, feel free. I saw there were a couple of questions already in the chat. I think Greg Martin, you had a question about standardized forms. Do you want to ask your question? Sure. If you can hear me okay. Yes. Go ahead, Greg. Yep. So I was just wondering if anyone, it seems like some of the systems are doing maybe more data harvesting from hospital or electronic healthcare systems and others are doing either manual or other abstraction methods. And I was wondering if people are using some of the standardized data definitions or case report forms that have been put out by WHO or ISARIC. And I'm asking mostly just to think about aggregating or making comparisons if things are harmonized. Anybody want to respond? I'll just say we're using the forms that the different societies have provided to us, which were, I think, drawn partially from those other efforts. I agree with you. We do need to have a standardized data collection system. The form should be harmonized. We're doing that within radiology, by the way. That's one of the main things we're doing with the other societies in radiology so that we have the same terminologies to describe the findings. And we have the same image format as well for 30 years at this point. So we are doing that, but I don't know if others are. Great. Yeah, I typed into the chat that the outcome scale that we're using in the Rheumatology Registry mirrors the WHO outcomes case report form. And in general, we actually tried to itemize as many of the scales as we could so that we could compare data, especially because this is a global effort. I think across countries, that information will be really helpful. That's great. I'm going to ask Rahul Kashyap to present on the SCCM registry. Absolutely. Thank you so much. It's so pleasing to see all of you coming together and working on it. And I absolutely agree with what could have taken us six months, nine months, a year. It's happening within weeks time. And that is a sad part of pandemic, but it's helping us innovate quicker and then breaking down those barriers. So very quickly, just sharing about SCCM virus data registry, COVID-19 registry. So this is hospital-based registry, which has been launched like six weeks ago. We are touching 2,500 patients now from 70 plus sites in US as well as 10 plus sites in six other countries. As Dr. Martin has mentioned about, we are looking into, we have adopted the ISRIC form, which was quite extensive. And then we added most ICU and hospital pertinent questions, ICU and hospital pertinent questions. So roughly now we have up to a thousand points, data points for each patient. We have shared our CRF case report forms with multiple groups, including parallel core group as well. And we are in process with collaborating with ACR and happy to share that with. We invite all of you to open up your sites in return. What we will do it like from day one, you will have access to all data, what you contribute as well. And then you will be able to have access to the whole dataset if it is coming from different sites as well. So that'll help us harmonize the data, not only looking at patient's symptoms, chronic medical conditions, the syndromes and process of care, including treatment and your resource utilization as well as outcome up to 28 days. And then we are with the help of other societies, especially with the American College of Radiology, we're trying to see we can create this robust data set of images as well, including x-ray, CT scan, echocardiography and ECG, which will feed to the practice in long run. Our only single mission, we started the whole registry was to collect the data in real time, which we have achieved in certain fashion, given that it is up and running one of the fastest and quick, first and fastest set up registry. And ideas to analyze the data in real time, because in the older ways, you collect the data for a year, try to analyze it next six months and then publish the year, two years later, that is no good for right now. So that's what we're doing it. So we will be happy to announce our first or second version of dashboard as early as next week. And I just want to take a minute that Dr. Kumar, who is a co-PI and a study from SCCM, as well as Dr. Ellen Walkie from Boston University, who's a co-PI on this along with myself, we have been recognized and then Moore Foundation was kind and gracious enough to provide early initial funding to support this registry. That was really vital. We all were running on gas, working on our own time, but that recognition will definitely help us in multiple ways, enroll more centers from hard zone areas, as well as ramp up our efforts for this early dashboard, which should help feeding back to the practice. So we invite you all to open up your sites and share data, and we'll be happily doing the same with you as well. So not only you have your rheumatology and dermatology and psychiatric and mental illness and radiology data will give you a rich thousand point phenotypical data on these patients, the time they hit an ER, come to hospital, stay on the floor with every single daily highest and lowest values of vitals, as well as lab values, Apache. So far, we have 25 plus pediatric center as well. And we just got announced that the five centers from China, four from Japan and few centers from England joining in. We are shooting for 400 plus centers, 25,000 patient data still September. Hope this dies down soon and we'd never see a second wave, but now we know that a second wave is imminent. It's just a matter of, it's not a matter of if, it's a matter of when. So hoping that we can answer some questions within SCCM as well as collaborating with all you, you all. Yeah, it's really interesting. You mentioned that when we had the kickoff call between AAMC and CMSS and Ashish Jha, who had brought us together to talk about this, the very first thing he said is, you know, I'm not sure how many questions you can answer right now in the current event, but he had no doubt that we needed to be ready to be able to answer questions in the fall and winter. And for those of you who heard him this morning, he was pretty clear about that. Bill, did you have a comment earlier? Did I miss your hand raise? I think you're on mute. We can't hear you. Any better now? Yes. Yes. Can you hear me now? Yes. Okay. Now I can't hear you. I'm not sure what's going on. Anyway, I was just going to reemphasize at his point about kind of passive or automated digital input of the data into these various registries. I could tell you that the so-called dose index registry that downloads data from CT scanners, for instance, we've now got over 200 million radiation exams in this registry simply because it doesn't require anybody to do anything once you've implemented the process. So I think the more we can move to that model, standardization and harmonization of the input forms and making it something that's basically automated and automatic, I think that's really where the money is as far as getting these huge data sets together. Thank you. Thanks, Bill. Janice, do you want to jump in and then I'll call on Daniel Young next? Sure. Great conversation, everyone. And a lot of the comments that I'm going to make, a number of them have already been addressed. So I actually think that Helen and I started talking about the incredible wealth of registries probably a year and a half ago. Wouldn't you say, Helen, that we started talking about it and saying, you know, the registries that are present, the registries that we have, what are the opportunities that we have? What can we learn from the current registries? I think we now look at the COVID-19 issue and say, you know, if not now, you know, when do we make changes so that we can have more value out of this? As both Ashish has said, as Helen has mentioned, we spoke probably about six, seven weeks ago and said, let's do a registry. Let's put everything in it and let's have it be for multiple diseases. So, you know, whether it's psych, whether it's germ, whether it's radiology, whatever, how can we do this? And after a number of discussions and phone calls around the country and recognizing that a number of the registries had gone up, what we made the decision at that time was to do two things. One is to do quite a bit of surveying. And so we do have survey data. And then the other thing is, is we've put together a clinical guidance repository and we're calling it a guidance, not a guideline for a specific reason. And I would say the best way to take a look at this is that we crowdsourced, not with the public, but crowdsourced with individuals that we selected policies and procedures and information in order to come to a consensus on care and what our learnings were. So you had to have a certain credibility, which is, you know, all of you guys who are on this chat. And what we did is brought your policies, brought your procedures forward, and then begin to looking for consensus and learning. And that's what we have. And the third thing that we did, and Helen did this work, is that we looked at and got a grant to take a look at a series of webinars that will talk about registries. And so that's sort of, you know, what we've done at the AAMC, what we've done with CMSS. But what we want to do is talk a little bit beyond this. So the question is, is how do we stop having registries, which are what I will call my father's registries, but they're my registries. You know, how do we register patients, have someone manually go through, dump the information. And many of you have talked about ways that you have utilized the electronic health record, but even still, we are not optimized to take a look at a number of different diseases. So the question is, is can all of us on the telephone, whether we're ASH, whether we're the American College of Surgeons, whether we're radiology, is there an opportunity for us to take a look and say, is there baseline data that we could get? And then it's sort of a hub and spoke where baseline data is brought together. And then we study different characteristics or different structures. What would that look like? What would it take? Is there an opportunity for us to take a look at some of the incredible, powerful big data sets that are out there that are looking at their ability, whether you say scrape the electronic health record or harmonize the electronic health record, what are the opportunities with that? In the last couple of weeks, I've talked with Vivian Lee at Verily, which is one of the alphabet companies for Google. And they have a registry, but it is past tense static. They have more than 10,000 people that continue to have records and they haven't, and they have everything that they can get on that person. So they have all of their medical records, any films that they've had, any EKGs. So we can take a look and say, do we just get, do we work with them and do we get a bucket of data on X thousands of patients and then continue to follow them? The second thing is I've talked to Tool Butte out in California and said, is there an opportunity for us to take a look at medical records and search medical records? And are we going to get sufficient information that we could then go back society by society and look for opportunities to enrich that data? Are there opportunities for us to take a look at functional status? Are there opportunities for us to take a look at morbidity and mortality? And I would tell you at the AAMC, we look at big data sets all the time. We have the ability, you know, like many of you, you're looking at big data sets. Working with Harvard, we've done this. And we have looked at outcomes, morbidity, mortality, different things across the United States. So I think it's an opportunity for us to not just do the clinical guidance repository that we're doing and to do the single disease specific registries that we have, but is there a way for us to think about this and think now so that as we go into the fall, we're sort of prepared in a new way to say, everyone's going to register in this way, or everyone's going to collect a certain amount of information. And I think that might entail not only us on the telephone, but having discussions with EPIC, having discussions with Cerner, or finding partners where we might be able to take a look at sort of a bigger registry that answers questions faster, smarter. And that is, you know, quite frankly, what we're thinking about right now, and the steps that we're looking at, and we're looking for partnerships, and I know, Helen, you know, we see not only the AAMC, but we see CMS's membership as sort of the perfect way for us to have further discussions about what I would call is the registry that we need for the future. What do we need now? And how do we get learning out of this quicker? I should also sort of as a side note say, is sort of this crowdsourcing of the clinical guidance repository has been incredibly robust. And I would say that we have had updates on respiratory care, updates on certain illnesses, almost on a, you know, every three days, every four days, and so there is an opportunity for us to have just-in-time learning and guidance, and then some, what I would call sort of, you know, an ability to take a look at this data and sit back and take a look at it. So Helen, that's sort of my thoughts. I hope I've captured some of our discussions, and I'd be very interested in what people think and what you think the opportunity might be for us to work collaboratively over the summer for the future. Absolutely. Thanks, Janice. And I think there are a lot of comments already we heard from all the different registries who presented on their interests, and in fact, working across, looking at where there are opportunities, in fact, to bring the registries together. And I think that's going to be one of the key questions going forward. Along those themes, I'm glad Daniel could join us, Daniel Yang from the Moore Foundation, who gave us the grant to kick off this webinar series. Daniel, you had a question very much along those lines about meta-registries. I'll turn to you. Sure. No, thank you. Daniel, a program officer at the Moore Foundation, have had a chance to interact with many of you on this call. You know, and I think Janice actually kind of answered the question that I had posed, which was, I mean, what we're seeing as a funder, particularly in the last few weeks, is I wouldn't say redundant efforts, but a lot of retooling of existing infrastructure, which we are appreciative of. We already have a registry, can we just add data elements to this? We already have a network of hospitals, can we just, you know, create a register on top of that? So, you know, we think that was a very pragmatic approach. But obviously, I think for us, it's we know that we know intentionally we're funding redundancy. You know, the Society for Critical Care Medicine, the American Heart Association is retooling their Get With The Guideline stroke heart attack registry and building a new one there. You know, and so I think people have mentioned some of the pain points around, you know, not only fighting for patients in the same hospitals, having, you know, patients with multiple diseases that may be captured in multiple registries, as well as the challenge of kind of aggregating information across registries, so a meta registry of sorts. So I'm completely supportive of Janice's comments around, you know, we know that we had insufficient infrastructure to quickly respond to this, you know, and, you know, using the mantra not letting a crisis go to waste, what would be an optimal infrastructure moving forward? You know, and how can we bring together the House of Medicine, so to speak, that would benefit from from shared intake, but also be able to meet the unique kind of research needs and of your society. So I mean, it's, I think for us, we don't have any preference for a single horse in the race. We want data infrastructure for researchers and clinicians to be able to quickly respond. But we are worried that, you know, that six, nine months from now, you know, that there's a lot of information out there that will be hard to interact with each other. That's great. Thank you. I wonder if Esther or Janice, just because you had a lot of conversations that were sort of cross registry, have any thoughts about this? Can you start? I can. Yeah, I can start. Yeah. So I think, you know, for for our patient population, that's on immunosuppressive drugs, I think there really has been a wonderful amount of collaboration across the various specialties that take care of those patients. So for example, we are in the process of trying to combine our data with inflammatory bowel disease folks. The American Uveitis Society has actually sort of joined efforts with us. And so there's a single entry point into multiple registries. I think there's going to be common data fields, including, you know, for pulmonary diseases and so forth. So I think as we move forward, the fact that we have used some standardized questions will allow us to combine data. But I think, you know, another issue unrelated to this, you know, specific registry is that I really see a need for a universal source of truth for sort of COVID-19 test results. This is a problem as we look at, you know, claims data, single institution data. You know, some people are having tests done in private labs, some people are having tests on public health labs and university labs. And in order to, like, use our registry infrastructure and really start to have aggregated, reliable sources of data, there's a need for, you know, just a COVID-19 positive test result data stream. So anyway, I think that's incredibly important. That's a great suggestion. Esther? No, I would just add to that point about the COVID testing. I think antibody testing is actually even known to amplify this problem that Dr. Ghazani was discussing. I think we're seeing it right now in dermatology because some of our findings, our dermatologic manifestations in COVID-19 are really late stage findings. So people are getting things like COVID toes, which are these perineal-like lesions at the feet. Some people are getting them when they're sick, but many people are getting them like four weeks later. And so, you know, antibody testing, I think, especially as we think about returning to work, not that we know whether a positive antibody actually confers any sort of, you know, immunity. But I do think that what I'm seeing now in our patients is that there's this like wide variety of, you know, antibody testing. It's almost even worse than the PCR, not worse than the PCR, but I mean, in terms of like lack of harmonization, that there's even more antibody tests out there. And if you go to two different labs, they're completely different. And so I totally echo what Dr. Ghazani said, and I think the situation is actually becoming more confusing rather than more clear. And certainly, I think, you know, data, we've actually just restructured our part of our registry literally two hours ago to try to better collect some of the antibody testing data because we're realizing there's just so many different possible combinations. Helen, if I can just hop in for half a second to talk about the antibody testing. We are really, really, really concerned about the antibody testing. So what happened with the PCR is, you know, we have significant problems. The FDA got a lot of flack as far as not being prepared and not approving tests. And you know, we're slowly coming out of that issue for PCR testing. And I know right now, you know, the Holy Grail is going to be a POC test. As far as antibody testing, the FDA did the opposite. What they ended up doing is allowing just a flood of antibody testing on the market. And right now, there are over 100 antibody testing. I mean, everyone from, you know, names that we all know that are trusted to, you know, you know, John's Garage antibody testing. And we are really concerned because if you take a look, we believe there's a prevalence of about 3 or 4% right now of antibodies, but there is a false negative of about 4%. There's a false positive. I'm sorry, there's a false negative that's higher than that, a false positive, which is around 5% in these tests. And so these are not antibody tests that we should be doing. So as a community, we need to be looking at them. We need to be selecting the tests that we trust. And I would be very cautious about utilizing antibody testing in your registers. If you go on the FDA site, I believe that there are two that have more extensive testing. But this is a big caution for us as we take a look. And I think it's harmful as we head into the fall to not have appropriate knowledge of who we can look at as, you know, having had the disease and hopefully having some immunity. So big caution on the antibody testing. Great. Cliff, any thoughts about the bigger picture question of single platform, federated, standardized, where do we go? Yeah, so I really appreciated Janice's and Daniel's kind of vision for all this, because that's where we should get to. And I think that as we've even tried to do it internally at the College of Surgeons with our registries, can we get them to talk? I mean, there are some things that we have found as hurdles and collectively there's already an answer or we can come to an answer. So one of them is when we try to develop a registry and try to limit or minimize or prevent having any PHI in it because of the aversion of lots of groups wanting to share information with PHI, then it becomes very difficult to merge. And so then we merge kind of probabilistic or whatever word we want to use for that. And it can be done. It's not perfect, but so identifiers to merge it. And so when we don't have or when we have PHI, then there's security issues, then the legal people come into play. And then that adds about 14 years to kind of putting stuff together. Maybe just 13 years. All right. So then the second thing is the clinical detail. And when we talk about clinical detail, having COVID yes or no, and we define it by having a PCR test and the antibodies don't count and whatever, whatever, that's easy enough. But a lot of the things that we've tried to do, even simple things, we have three different definitions of something as simple as readmission. And so to the degree that we can get simple things defined similarly across the registries and even complex things that may have an ICD code or may not. And then from all of the technology people telling like, well, it's you, the surgeon's fault for your surgical patients because you don't have structured data input the way maybe radiology does or pathology does. And so how do we kind of get everyone up to a certain level across the board so we can get to these meta registry? So I think that those are some of the hurdles we have found. And if we have a collective answer to this that everyone is dealing with for both these things, that would be really helpful, I think for all of us. But these are hurdles that we currently have as we're trying to even put our internal ones together. Great. That's really helpful. These are amazing comments. And I think that a lot of this was really to begin the discussion. And as Janice mentioned, we are now planning this next COVID-19 clinical registry series. So we'll have the next four to six webinars to really dive deeper on any one of these topics. And I think certainly you guys have all brought up a lot of really good ones today. Maybe I'll just open it up, probably, to the group. If you could think about what would be a good topic for a registry based on what we've talked about today or even beyond that, please shoot it out. I think the ones I've certainly heard today is, I think, obviously, a very strong one about how do we link the knowledge that we're gaining across the registries. I think it's going to be pretty critical. What's the role of standardization and harmonization to even allow us, even if they're not linked, to in fact get basic and to get information that's more generalizable out? Some, I think, interesting opportunities around looking at national, international collaborations. And of course, what's the ability to get automated data? The example that Etta and Bill were able to share about radiology is extraordinary. Are there comparable other ways to begin looking at getting some of these data sources? And of course, the importance of having reliable data going in. And I think the point about the COVID-19 testing, especially the antibody testing, we may even want a whole registry webinar just on understanding what kind of laboratory data needs to be standardized and looked at. So with that, let me stop. See if anybody wants to give us some specific topics for the webinar series. And we'll go from there. I think data automation is going to be key, which is coming out at how we can make these registries seamless. We live in 2020, and it's still yet I have to find out any 100% automation data coming in. Radiology might be at that stage. Other than that, I think still it requires a large number, almost 100% of manual data. That could be one of the points. And then across society collaborations, CMS is taking a lead, coming up with a game plan for even before the second wave hit would be a huge interest for many societies. I'd like to make a point. I think one of the problems is we don't have a natural convener to create this integrated registry. I've been talking with people at the NIH quite a bit in the last few weeks about this. We're just siloed. I mean, just this call reminds me of that. The patients are not siloed, but we are. So we need to find a way to reach across our disciplines. And somebody needs to convene us and say, this is a public health emergency. This is the use case that was envisioned. I know that it probably wouldn't persuade the federal government right now that Vice President Biden's group proposed it, but we need to read that document and follow what they said there, which was written for cancer, but it could be any use case. And we need somebody to be the leader on this. I think we need to set politics aside within our institutions. The second point is these networks already exist. That's the amusing thing about this. The CTSAs already have a network that shares data across the boundaries of institutions. And by the way, so does the National Cancer Institute. And so we have a network that already exists. If you think it's just for academic health systems, it's not. The National Cancer Institute, I mentioned the study I'm running with 150 sites, many of them are in rural communities in the United States, and that's because we have a network called the NCORP, which stands for the National Community Oncology Research Program. So the 18,000 sites the ACR is already connected to are already connected in rural communities in all over the country and the world. And so we need to take advantage of what we already have. We could stand up an integrative registry pretty quickly if somebody leads and says it has to happen. I don't know who that leader is. I have been waiting for Francis Collins to stand up and say, this is what we're doing in response to the COVID, and maybe he's going to, but somebody has to be the person who convenes it. It can't happen on its own. But by the way, industry's ready to help. I've also spoken to a lot of companies, and Bill has as well, Bill Thorworth, who's my boss sitting here listening in. We've spoken to all the major imaging companies, most of them, and lots and lots of other companies, including big tech companies. They want to help. This is the public. They are willing to set aside their competitive natures to help build this thing. So we need to take advantage of this crisis, but somebody has to convene this. So... Well, we're happy to take the first step here, at least, and convene us and maybe identify the key questions and what needs to happen. I do think there are steps in advance of even getting to the holy grail where we could make steady progress towards that ultimate vision, especially with this crisis upon us. I'll mention our industry partners are on this call as well, like Hubia and others, and Prometheus and several other folks, just to help us also think through... Many of the folks who already work with our registries as their registry vendors are now ready to potentially see how they could help us, Arbometrics as well. So I think there are opportunities for us to think both in terms of the industry space around the registries, but I think even thinking bigger around the industry space, around the radiology community, the laboratory community, and potentially even the bigger data community, as Janet's pointed out, conversations with Google, Apple, and others, understanding what they're doing. But I think one piece of this is also going to be a recognition that, for some areas, you do need to go deep. And I think when you go deep, you do tend to stay in a disease silo, because you probably wouldn't get the same level of understanding of, for example, rheumatologic patients are not going to be widely represented in a national registry, how do we make sure that we capture that as well? So I think the question is going to be, how do we have the depth we need within key areas, but then the ability to connect those dots? And I hope that's part of what we can come up with over the course of the webinars. I think, Daniel, do you have another comment? Yeah. Just, I mean, one, which is just more of an advocacy one around registries, and we're focused on diagnostic excellence, and unfortunately, disease-specific registries are focused on diseases. So the symptom-to-diagnosis component is frequently not as well-captured in a registry. I think the other element to consider for this webinar is that, if the goal is aggregation of patient data to drive clinical insight, registries is just one approach for doing that. And so we've also been funding these federated data warehouses, which will map common data elements to EMRs. And so it allows you, without the data ever leaving the core institution or site, it would allow you to query the data across multiple sites. So for example, we funded a group called P-Scanner, which has all the UCs, it has the National VA system. And so for them, they're kind of finding a different way of aggregating data without actually having a central repository of data. So I wonder if we could include those other efforts and approaches to data aggregation besides the disease-specific registries as well. Absolutely. Any other comments, thoughts about what we could do on this series? We don't have to do it all today. I recognize it's also been a very long day. Our friends in the policy group already decided to close up shop. They're a little tired. So we've been at this for a long time, sitting in Zoom. So let me do one more round for our initial speakers. Any comments from Esther, Cliff, Etta, or Janice or Janice? All right. Well, let me just say thank you to everybody for really an incredibly rich, really, really rich discussion. I think we learned a lot about what has happened so, so quickly. And I think many of you have given us a vision of where we want to go. I think hopefully over the next couple of months, we'll figure out, hopefully before the fall and winter, if it hits again, what's a strategy to help pull these together to get a more unified view. So Janice and I will be reaching out to some of you to help us with an extra advisory panel to start planning these webinars out and look forward to having your thoughts and insights. Feel free to send notes to me or anyone else, and we'd be delighted to get your insights. So everyone, thanks again. Have a wonderful weekend, and you'll be getting an evaluation tomorrow. Please fill it out. Thanks, everybody. Bye-bye. Thanks, Ellen. Thanks, all. Stay healthy. Yeah. Thank you, everyone. Bye.

clinical registries

COVID-19 treatment

data collection

pandemic response

multidisciplinary collaboration

automated data

integrated data sharing

elective surgeries

standardized methods

cross-specialty collaboration

data infrastructure

pandemic response framework