Early Data is in for the COVID-19 Rheumatology Registry


The international registry that was created in March to track rheumatology patients who have contracted COVID-19, has released data from the first 110 cases from six continents.

The international registry that was created in March to track rheumatology patients who have contracted COVID-19, has released data from the first 110 cases from six continents.

"Within 1 week of launching the registry, rheumatology providers from around the world submitted data on more than 100 cases, allowing very preliminary characterization and rapid dissemination of information regarding COVID-19 in individuals with rheumatic disease," Milena A. Gianfrancesco, Ph.D., MPH, and colleagues wrote in the April 16 online issue of Lancet Rheumatology. Dr. Gianfrancesco is among the physicians who are participating in the COVID-19 Global Rheumatology Alliance which is tracking COVID-19 cases among rheumatic disease patients.

The data show that most patients in the registry had more than one rheumatic disease, but the primary conditions included rheumatoid arthritis with 40 patients (36%); psoriatic arthritis with 19 patients (17%); systemic lupus erythematosus (SLE) with 19 patients (17%); axial spondyloarthritis with 7 patients (6%); and, vasculitis with 7 patients (6%).

The patients were overwhelmingly female with 79 cases (or, 72%), but only 20 (18%) of the 110 patients  65 years old or older.

Of 110 patients, 69 (or, 63%) were receiving conventional synthetic disease-modifying anti-rheumatic drugs (DMARDs) prior to contracting COVID-19. These included antimalarials, azathioprine, cyclophosphamide, ciclosporine, leflunomide, methotrexate, mycophenolate mofetil, mycophenolic acid, sulfasalazine, and tacrolimus. And, 49 patients (45%) were receiving biologic DMARDs, including abatacept, belimumab, CD20 inhibitors, IL-1 inhibitors, IL-6 inhibitors, IL-12 and IL-23 inhibitors, IL-17 inhibitors, and tumor necrosis factor inhibitors.

Five patients (5%) were receiving JAK inhibitors; 28 (25%) were receiving NSAIDs; 27 (25%) were receiving glucocorticoids and five 5 (5%) were receiving other pharmaceutical treatments, such as antifibrotics, apremilast, intravenous immunoglobulin, thalidomide or lenalidomide, or other.

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In addition to having more than one rheumatic conditions, the data show that patients had other conditions that included hypertension with 31 cases (28%); pre-existing lung disease (chronic obstructive pulmonary disease, asthma, interstitial lung disease, or other) with 22 cases (20%); cardiovascular disease with 12 cases (11%); morbid obesity with nine cases (8%); and, diabetes with nine cases (8%).

The most common symptom of COVID-19 included fever among 87 patients (79%); cough reported by 85 patients (77%); shortness of breath in 55 patients (50%); myalgia in 49 patients (45%); and, sore throat by 41 patients (37%).

Thirty-nine (35%) of patients were admitted to the hospital and there were six deaths (5%) among the 110 cases.

"Individuals with inflammatory rheumatic disease require special consideration with regard to coronavirus disease 2019 (COVID-19), caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Many of these individuals are considered at-risk for serious infections due to their immunocompromised state resulting from their underlying immune conditions and use of targeted immune-modulating therapies such as biologics," Gianfrancesco and colleagues wrote.
The data that have been reported to date is "very preliminary" the researchers wrote. Ultimately, investigators will examine differences in disease severity by sociodemographic characteristics, rheumatic disease status, medications taken before diagnosis and those administered at diagnosis. A goal of the study is to determine if background immunosuppressive medications led to an increased risk for contracting COVID-19 or whether they were protective.


The authors noted some limitations, including a potential selection bias towards more severe cases because some countries are only testing people who exhibit severe symptoms of COVID-19. In addition, the reporting of cases may be delayed because many rheumatologists have been called upon to provide front-line medical care.
And, "the whole denominator of individuals with rheumatic diseases who acquire COVID-19 is unknown. The database will be unable to provide accurate estimates of the risk of specific outcomes across the entire rheumatic disease population or in association with specific treatments. With time, existing patient registries and administrative databases will provide these data, but likely not until the current pandemic has ended, thus strengthening the current and critical role of this database," the authors wrote.


Milena A Gianfrancesco, Kimme L Hyrich, Laure Gossec, et al. "Rheumatic disease and COVID-19: initial data from the COVID-19 Global Rheumatology Alliance provider registries,"Lancet Rheumatology. Published online April 16, 2020. DOI:https://doi.org/10.1016/S2665-9913(20)30095-3

For more information about the registry, see "Provider-Entered, Patient-Experience, and Pediatric Registries are Now Available."


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