COVID-19 Global Rheumatology Alliance Registry
We are proud to support the COVID-19 Global Rheumatology Alliance’s Registry. This important international effort will collect de-identified information from clinicians and people with rheumatic diseases, such as lupus. Currently, little is known about the coronavirus (COVID-19) and how it impacts people with rheumatic diseases. The information collected in the registry will help evaluate the risk of COVID-19 among people with rheumatologic disease and provide information that will help improve the way doctors manage and treat rheumatic patients during this time.
There are two separate registry questionnaires. The questionnaire for patients takes about 15 minutes to answer, and the questionnaire for clinicians takes between 5 - 10 minutes.
“By having rheumatologists and people with lupus participate in these registries, our community can urgently collect the data needed to address important questions about lupus, hydroxychloroquine and outcomes during the COVID-19 pandemic,” said Jinoos Yazdany, Vice-Chair, Real-World Data Infrastructure, Registry and IRB/Ethics for the Global Rheumatology Alliance; Chief of the Division of Rheumatology at Zuckerberg San Francisco General Hospital; Alice Betts Endowed Professor of Medicine at the University of California, San Francisco; and past Lupus Foundation of America Mary Betty Stevens Young Investigator Prize Awardee.
The study survey will ask questions including:
- Medical history and medications taken for rheumatic disease
- Any symptoms developed, whether you have been diagnosed with COVID-19 and how you were treated
- How the COVID-19 pandemic changed behaviors, including taking medications and communication with your rheumatologist
To be eligible for the survey, you must be 18 and over with a rheumatic disease, like lupus, or a parent of a child with a rheumatic disease. You do not need to have COVID-19 symptoms or be diagnosed with COVID-19 to participate.
The clinician registry is for healthcare providers to enter data about their rheumatology patients with COVID-19 infections. Any rheumatology clinician from around the world can participate. The Global Rheumatology Alliance is also working closely with the European League Against Rheumatism (EULAR) to align on and report data from European countries, as well as the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to collect data for pediatric populations.
- Access the Adult Registry for Clinicians (not part of EULAR)
- Access the Pediatric Registry for Clinicians (not part of EULAR)
- Access the Adult and Pediatric Registry for Clinicians (Europe, part of EULAR)
Patient Telemedicine Survey
Take the Global Rheumatology Alliance's survey on telemedicine. If you are living with lupus (or other rheumatic disease) or are the parent or caregiver, share your perspectives on the use of telemedicine in your rheumatologic care during the COVID-19 pandemic.
The Latest from the Registry
Our Inside Lupus Research team is reporting on the latest analysis of data from the Global Rheumatology Registry:
- June 2, 2020: Analysis of data as of April 20 examining demographic and clinical factors associated with COVID-19 hospitalization in people with rheumatic diseases. Includes a total of 600 cases from 40 countries.
- April 20, 2020: Analysis of data as of April 1 including 110 individuals with rheumatic disease who have been diagnosed with COVID-19 are included from six continents.