COVID - 19 Global Rheumatology Alliance Save

Hi, I'm Jack Cush with roomnow.com. I'm here to talk about the COVID-nineteen Global Rheumatology Alliance and one of the forces behind that, Doctor. Philip Robinson from the University of Queensland in Brisbane. Hello, Philip.

Hi, how are doing, Jack?

Great, I'm so glad to have you on. Us about this amazing project has really gotten off to a rocket start. And it's got the endorsement of everybody in the rheumatology community but tell me how the idea was formed and who's been behind it.

So we were just sitting on Twitter discussing these, you know, the pandemic, right? It's what everyone's talking about, it's what we were worrying about. And at that time around the March, depending on where you were in the world, things were just getting started really. Things were starting to look like it might go quite bad. And Lynn Calabresi from Cleveland said, Hey, look, these IBD guys have started a registry.

So a few of us started talking about this and myself and Janusi Asdani from UCSF sort of said, well, look, let's just run with this, let's just get this going. So we set up a Zoom call within about a day and talked about it and then we just got on with it and sort of dragged in people who were keen and interested to help. And it's just got bigger and bigger and bigger. And it went from something like 20 on the first day and then 50 and then 80 and then to sort of email list that we're using. And now there's over 300 people and as you say, well over 100 organisations that have said that they are keen to support us.

So you've gone from zero to a 100 miles an hour real quick. And at this point, it seems like less than two weeks later, since I've heard about it, you've already got 52 patients enrolled and UR's got its parallel registry. Tell the relationship between the GRA and the European UR registry?

Yeah, so as of right now, we've got 57 in the global registry. Due to European laws and stuff, we've got essentially a mirror registry there that exactly mirrors the global registry and we're gonna come together and report it. And the only reason that they're separate is just due to regulation. But we have a fantastic UR representative sitting on the steering committee and we are committed to doing this as a global effort. So that is just an administrative thing really.

But if there are Europeans that want to report, they need to report into the European registry and that's on our homepage.

So what are the goals? What are you looking in this registry? What data are you looking to acquire?

So essentially we are trying to get data that can help rheumatologists practice with their patients. And to do that we need to know about rheumatology patients who have become infected. So we're interested in getting information about patient demographics, about their diagnoses, about the medications they're on, about their comorbidities and then how they've gone when they've got an infection. And we're collecting a few other small things around the site but those are the sort of the big ticket items that are gonna help us at least start to think about how we maybe should be managing these patients.

So rooms are going to enroll patients if they have proven infection or suspected infection or no infection at all?

So we are interested in patients who have likely infection. We capture the information about how the diagnosis was made. And certainly if you have a patient who is in close contact and they had pretty typical symptoms, then there's an option in the registry to say, look, symptoms are very consistent with that. So we're not too rigid about this because we can always cut the data later and say these are the people that were proven with RNA tests. We want to try and collect as much as we can because that's where we think we're going to be able to get and help people.

So I just had a lupus patient, a young male on some research drugs, pretty active lupus, doing fairly well, come down with very flu like symptoms, very COVID like. We sent him for testing. We got back to test yesterday. He's negative, but I would have enrolled him in this registry. Do you think that's not a good idea or a

good idea? Well one of the really great things that we've managed to set up with the registry is that it will enable you to go back and update information. So you can say, Hey look, this looks really like COVID to me. Put all the data in there and then later on maybe they have a first test and you think, Is this a false negative? And then they have a second test and maybe a serology.

You can come back to us and go, look guys, it looked for all the world like an infection but in fact it wasn't. So I think you should take that out of the dataset. So we actually have the ability because, and the other thing you can do is even if you've got a proven patient, you can say, hey, they're in hospital now, they're not intubated, they're not in ICU, they seem to be doing well. And who knows what could happen to them, right? You report them and then you can come back to us later going, look, great news, they got better, they're out of hospital or they deteriorated or whatever happens to them.

You can give us the full story. You don't need to wait all the way till the end.

When you first started this registering, my partner, Catherine Dow wrote an introductory piece that you and Suleiman Bana put together a follow-up piece to, but she came to me, she said, look, let's start collecting, names of patients who we think might have this kind of infection. And I looked at her and said, I haven't had anybody yet. As soon as we had that discussion, by the end of the day, I had three people on my list. By the next day, I had another five people on my list. So I think the idea is getting into people's heads that we need to collect this data is gonna make the data collection a whole lot easier.

Yeah, and that's the thing that we've been really blown away by. The people have said, look, think this is valuable. Hey, I'm going to tell my friends, I'm going to send my networks. And we've had all these state based and global and country networks say, Hey, we're sending it out there. And we've had a huge flood of people both follow the Twitter and go and visit the website and we're working on promoting that and also through other avenues as well.

So do you want the doctors to register on the site first and then enter patients or is it all the same step?

Yeah, so there's no double step, there's no sort of password or any sort of frustrating thing like that. You just need to go to the website, there's a very clear button on the homepage report a case, you click through and you just start putting in the details. We ask for your email address and permission to contact you about the case and that's simply so you can update us if you want or we can actually expand on the studies if you want to get involved in that. So that's the way that we help to close the loop. But of course if you don't want to then that's fine.

But if you just want to report the case, but we give you that option as well.

My last question is I see you're interested in patient centered research. Tell me what you're going after.

Yeah, so we also think that talking directly to patients is of value because rheumatologists and hospital doctors are probably only gonna see a certain type of patient. They're not gonna see the mild patient that stays at home. And you can certainly imagine how that would create quite a bias in the patients that we collect in the registry. So we were very keen to engage directly with patients to find out what was happening to them. So if they said, Hey, look, I went to my family doctor, I got a test, I was positive, I was well, I stayed at home, maybe I got my methotrexate stopped or that sort of detail is valuable because that fills out the other side of this.

And we're also engaging with payers in The United States as well. We've had a couple come to us saying, we would love to give you administrative level data. Now that clearly doesn't have quite the granularity of physicians or patients but certainly it's another aspect to try and get as many of those different cases from the different angles as possible.

So I wanna close by informing our audience to follow the registry on Twitter. It's at room_covid and then the site to go to enroll a patient is roomcovid.org. Philip, do you have any closing comments?

I just want to say that if you're able to, I think it would be a great service to your community and your patients if you're able to report cases. Certainly realise that everyone's busy right now but it's certainly going to benefit the community if you're able to do that. So thank you very much.

Together we can get a lot of great data right quick as we say here in Texas. We should all be a part of this.

Yeah.

Alright, Philip, thank you very much.

Great. Thanks Jack. I really appreciate your support.

Okay. Hey, this is gonna be great. Is there a Hold on a second. Yeah,