A/Prof Phil Robinson

Rheumatologists in Australia and around the world have moved to assemble a global alliance of clinicians, researchers and big industry in a bid to quash the spread of misinformation about COVID-19 and understand how to treat the potentially deadly virus in patients with rheumatic disease and particularly those on immunosuppressive therapies.

The Group is working on an international case-reporting registry  – rheum-covid.org – to collect patient data that will help guide rheumatology clinicians in evaluating the risk of infection in patients on immunosuppression.

Spearheading the alliance in Australia is Associate Professor Philip Robinson, rheumatologist at the Royal Brisbane and Women’s Hospital

Speaking to the limbic he says the registry is a response to the significant concerns voiced among doctors and patients about how the novel coronavirus will affect rheumatic conditions.

“We don’t really know yet whether we should be stopping medications, if some of our medications are beneficial [against COVID-19] and if some are potentially going to create risk for our patients; we just don’t have that data. You can speculate based on science based on lab experiments as much as you like but nothing gives you as much reassurance as actually getting patient data”.

The Alliance is asking that clinicians use the site to report any and all cases of COVID-19 in rheumatology patients, including those with mild or no symptoms.

Professor Robinson says the completion of the case report form, which he anticipates will go live next week (23 March), should take 5-10 minutes and adds that no protected health information is requested.

“We plan to use the relevant information from these cases to provide expeditious updates to the global rheumatology community,” the Alliance states on its website.

Looking to the IBD community, who established the Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-IBD) international registry which will monitor and report on outcomes of COVID-19 occurring in IBD patients, Professor Robinson says he was inspired to do the same for rheumatology patients.

“It was something that started initially through a discussion I was having with others on Twitter after we saw what the IBD consortium were doing. It grew from there and has got bigger and bigger,” he said of the backing received from Rheumatology societies and associations and major Journal publishers across the world.

The Alliance, whose data analysis group is set up at the University of California San Francisco, is now talking to industry and large US health insurers about how they can help it capture and link data to health records.

“What we want is to be able to provide data to patients and doctors to try and provide some evidence-based guidance on how we should be treating our patients who test positive for COVID-19,” explains Professor Robinson.

But he also stresses that there will be limitations on how that data can be interpreted in practice.

“We’re not able to get a the denominator here so we need to be really careful about drawing strong conclusions from this data. Yes, we might have 10 patients with the virus at home on methotrexate doing well and that’s a good news story, but we don’t know if there are others – maybe many more others – in ICU. It’s a mixed bag of data that we’re going to get but some data is better than no data and that’s the principle that we’re working on”.

Meanwhile commenting on the growing interest in rheumatic therapeutics like tocilizumab and hydroxychloroquine to treat COVID-19 Professor Robinson speculates that such drugs could play a role in taming the aggressive inflammatory response observed in the lungs of severely and critically ill patients.

But he remains cautious about the development.

“If these drugs end up being used widely then there is some concern that they’re going to end up not being available for our patients and so I think we have to be careful about what we end up deciding to do as a medical profession. There’s not an unlimited supply of these drugs so we need to be careful because we don’t want our patients, and I’m thinking particularly about our lupus patients, to get unwell from their rheumatic conditions because they can’t take their medication.”

Also addressing recent concerns about NSAIDs and corticosteroid use in coronavirus, Professor Robinson emphasises the need to reassure patients.

“We have known for a long time that corticosteroids in high dose provide a strong risk for infections so those are the patients that I’m thinking about here, but at the same time we don’t prescribe high dose corticosteroids for no reason we generally use them in pretty serious conditions.

“So we need to be careful about discussing what drugs might be bad and what might be good in the context of COVID-19 without really looking at why people are taking them to begin with.”

“A patient might read an article reporting that steroids are bad and they stop taking them – and then they have a stroke from their vasculitis. But in fact if they’re an 80 year-old, they’re at home and they’re being careful about not coming into contact with people who could be infected then their risk is practically zero so its really important – I cannot emphasise it enough – that doctors talk to their patients about any worries patients might have in terms of coronavirus and their medications.”