Rheumatology Coalition Unveils Patient Registry to ‘Curate, Disseminate’ COVID-19 Data
A newly formed organization, the COVID-19 Global Rheumatology Alliance, has launched an international registry to collect data on patients with rheumatic diseases who may or may not have contracted the infection that is causing the global pandemic. The aim is to aid clinicians and researchers in real time as the situation evolves.
The Alliance comprises more than 100 supporting organizations worldwide, according to Paul Sufka, MD, a rheumatologist at HealthPartners Medical Group and Regions Hospital in St. Paul, Minnesota, who is spearheading the effort.
“Because COVID-19 is a new disease, we know very little about it in general, and even less about how it affects patients with rheumatologic conditions,” Sufka told Healio Rheumatology. “This registry, which will gather data from cases worldwide, will be helpful in identifying which patients might be at increased risk of more severe COVID-19 infections based on their condition or the current medications they are taking, as well as other risk factors.”
The registry will gather data on all patients, whether they are asymptomatic or have severe complications. Data are data, according to Sufka. They can help guide doctors in the clinic and provide the bedrock for future research into the infection as it pertains to patients with rheumatologic diseases.
Completion of a case report will take 5 to 10 minutes and requires disclosure of no protected health information. It is entirely voluntary, but the organizers believe that as more information is accrued, leaders of the global rheumatology community will be able to provide expeditious, evidence-based decisions about treatment protocols.
“By knowing which patients are more likely to have more severe infections or complications from COVID-19, rheumatologists may be able to better guide their patients,” he said. “This could mean more strict social isolation for high risk patients based on their disease, or understanding that certain medications are higher risk and might be switched or discontinued.”
One of the biggest hurdles to managing rheumatologic diseases in the midst of the pandemic is gathering enough information to see a trend in the data, according to Sufka. “For this reason, I felt it was extremely important for rheumatologists and other health care workers to quickly become aware of it and start using it,” he said. “We leveraged social media heavily to increase awareness of the registry, and launched a huge social media campaign, which included a quickly built large mailing list, and a press release.”
Clinicians are encouraged to add the COVID-19 Global Rheumatology Alliance site to their browsers, to email members of their various professional organizations about it, to advertise the registry in the publications to which they contribute, and to share data on social media. The Alliance can be found on Twitter at @rheum_covid, and interested parties can consider using the Twitter hashtag #Covid4Rheum.
Sufka stressed, however, that the registry is secure and de-identified, and is intended to curate and disseminate information from submitted cases. The hope is to fill as many knowledge gaps as possible. In particular, rheumatologists can learn about outcome data for patients with various diseases who developed COVID-19 and understand the influence of medications like hydroxychloroquine on other patients.
However, Sufka also noted that potential treatments for COVID-19 will not be addressed in the registry. “Unfortunately, the type of data that are obtained by a registry do not confirm that a specific treatment is effective or ineffective,” he said. “That requires a standard randomized controlled trial. The registry might be able to more quickly identify potential treatments, especially if patients on certain medications seem to have less severe COVID-19 infections and have better outcomes.”
If there is another key consideration for both rheumatologists and their patients, it is the impact of immunosuppressive medications on COVID-19. “Since many patients are extremely concerned about how their immunosuppressive medication will affect them if they are infected with COVID-19, we may be able to determine if some medications may be higher or lower risk, which would help rheumatologists guide their patients,” Sufka said. – by Rob Volansky
For more information:
Paul Sufka, MD, can be reached at 401 Phalen Blvd., St Paul, MN 55130; email: firstname.lastname@example.org.
Disclosure: Sufka reports being the social media editor for @ACR_Journals, including Arthritis & Rheumatology, Arthritis Care & Research, and ACR Open Rheumatology.