Rheumatologists, researchers, and patients have joined forces on a global scale to better understand how COVID-19 affects people with rheumatic diseases, including those with systemic lupus erythematosus (SLE).
The COVID-19 Global Rheumatology Alliance registry, which had more than 100 cases within one week of launching, “represents the commitment of rheumatologists to generate rapid data to help inform the care of individuals with rheumatic disease,” the researchers wrote in the study.
Their registry and initial findings have been detailed in “Rheumatic disease and COVID-19: initial data from the COVID-19 Global Rheumatology Alliance provider registries,” a study published in The Lancet Rheumatology.
People with SLE and other rheumatic diseases are known to be more vulnerable to infections due to abnormalities in their immune response as well as their use of treatments that involve immune system suppression — or immunosuppressants.
This is also thought to put them at greater risk of contracting SARS-CoV-2, the virus that causes COVID-19, and of experiencing more severe infections, but many disease-modifying treatments routinely used for rheumatic diseases also are being investigated as potential therapies for COVID-19.
As such, clinicians need to understand whether immunosuppressants increase or decrease the risk for severe coronavirus infections in people with rheumatic diseases, which will determine how to best manage these patients.
To answer these key clinical questions, the COVID-19 Global Rheumatology Alliance developed online portals that allow rheumatologists and healthcare providers around the world to provide information on people with rheumatic disease who have been infected with SARS-CoV-2.
When filling out the forms, providers are asked to include the patient’s sociodemographic information — age, sex, race, and ethnicity — as well as multiple clinical variables associated with their rheumatic disease and COVID-19-related illness, such as date of diagnosis, disease severity, medications, and outcomes. If available, laboratory measures can also be included.
As of April 1, less than one week after the registry was created, 110 cases from Europe, North and South America, Asia, Africa, and Oceania had already been included. Patients were mostly women (72%), and 18% were older than 65.
SLE and psoriatic arthritis were among the most common rheumatic diseases (17% each), preceded only by rheumatoid arthritis (36%). Other common diseases included axial spondyloarthritis (6%), vasculitis (6%), and Sjögren’ssyndrome (5%).
Most of the patients (63%) were taking conventional synthetic disease-modifying anti-rheumatic drugs, or DMARDs, such as antimalarials, azathioprine, cyclophosphamide, or methotrexate. A large proportion (45%) were also on biological DMARDs, including Orencia (abatacept), Benlysta (belimumab), CD20 inhibitors, and TNF inhibitors.
An analysis of the most common first symptoms of COVID-19 revealed that patients more often presented with a fever (79%) and cough (77%), followed by shortness of breath (50%), muscle pain (45%), and sore throat (37%).
A total of 39 patients (35%) were admitted to the hospital and six (5%) died.
According to the researchers, the registry shows that “with global cooperation, the rapid collection of data during an international crisis is possible.”
“Within 1 week of launching the registry, rheumatology providers from around the world have submitted data on more than 100 cases, allowing very preliminary characterisation and rapid dissemination of information regarding COVID-19 in individuals with rheumatic disease,” they added.
The global nature of the registry may increase the capacity to examine important risk factors and outcomes of individuals with rheumatic diseases infected with the new coronavirus. But the team says it is not without limitations, as it is likely that only more severe cases will be included, and that the extreme pressure to provide front-line medical care in this pandemic will limit rheumatologists’ ability to report cases.
Yet “information from this database will provide timely and responsive real-world data where large literature gaps exist,” the team wrote.
The alliance is also conducting a patient survey, aimed at adults with rheumatic diseases and parents of children with rheumatic disorders, to investigate how to best prevent or treat COVID-19 in this population. Participants are asked about their medical history, medication for their rheumatic condition, symptoms developed in case of coronavirus infection, as well as its treatment and outcome.
In addition, the researchers intend to investigate whether and how the pandemic changed patients’ behaviors, namely if they stopped taking certain medications, if they started managing their rheumatic disease differently, and whether they have been able to communicate with their rheumatologist.
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