DocWire News recently highlighted the COVID-19 Global Rheumatology Alliance, which is calling on clinicians to provide data on their patients who have tested positive for COVID-19.
We interviewed Suleman Bhana, MD, Chair, Communications and Marketing Committee of the American College of Rheumatology, as well as Organizational Liaison for the COVID-19 Global Rheumatology Registry, to share some insight into the Alliance including how it was started, what its goals are, and looking ahead.
DocWire News: When did the idea to create the COVID-19 Global Rheumatology Alliance occur?
Dr. Bhana: It was really organic in nature. It was established on March 12th. The idea was started by Dr. Leonard Calabrese from Cleveland Clinic; he had looked at a similar patient-based registry that gastroenterologists had set up for inflammatory bowel disease. He just put an idea out there that maybe somebody in rheumatology should do this for our own patients. Dr. Phillip Robinson from Brisbane, Australia decided to sort of take the charge in this and ran it by a bunch of people who he thought would be interested through Twitter, through social media.
From there it expanded through email. I think there was about 10 of us with the whole group that expressed interest. Then we set up a Slack channel to start coordinating and collaborating our information and projects. From there it bloomed out from 10 people to now well over 400 people who are part of the Slack group. It’s comprised primarily of physicians but there’s a lot of other people involved including patients and allied health professionals who have had to put their time and effort in.
DocWire News: What is the mission of the COVID-19 Global Rheumatology Alliance?
Dr. Bhana: The mission is to integrate the international case reporting registry that’s for identifying patient health information and use that to curate data on rheumatic patients that have become positive for COVID-19 and disseminate that output from the registry internationally as well. We’re hoping that once we collect all this information that will guide clinicians in how we manage and treat patients with rheumatic diseases, particularly our patients who are also immunosuppressed because of their treatments.
DocWire News: Are there any specific questions in mind that the Alliance hopes to obtain answers to?
Dr. Bhana: We’re hoping to find trends that may denote the risk perhaps of infection for COVID-19 for certain subgroups of patients or perhaps risks for certain treatments that we use in rheumatology that might increase your risk of getting the virus or perhaps having good outcomes. Conversely, there’s a lot of talk in the press about researching medications that are not necessarily antivirals for treatment of COVID-19; that includes rheumatic medications such as hydroxychloroquine, tocilizumab amongst many others.
So we want to use these data to see if those treatments are shown to be helpful for patients who are already taking those medications or are more studies really needed to determine the efficacy of these treatments. Based on some early data that’s coming out, we’d analyzed about 167 patients for all rheumatic conditions, that includes lupus. A lot of lupus patients take hydroxychloroquine. We found that about 25% of patients on the registry who became infected with COVID-19 were already on hydroxychloroquine as a maintenance medication at the time of diagnosis. So I think for what only limited data that we have we can say that we are not able to report any evidence of the clear protective effect of people using hydroxychloroquine who contract COVID-19. We’re analyzing more of that data as they come in and seeing if there’s any perhaps for other medications.
DocWire News: Do you have any closing comments or any additional information you’d like to share with DocWire News readers?
Dr. Bhana: I think it’s fair to believe science and keep informing readers of scientific testing and analysis. … We’re all looking for an effective treatment or vaccine but I think we also fear giving false hope to people who are still at high risk and they go at treatments that are not effective, or if a vaccine is rushed without proper testing, that could put them at serious risk; perhaps even death can occur if these treatments are not properly vetted or the vaccines aren’t properly vetted. The big picture is we want to inspire confidence to the general population but also trust the scientists, trust the doctors who are treating this. Politicians should be doing the same thing. I think the science should be dictating policies, not the other way around.