New registry launched to collect and share data on how COVID-19 affects individuals with rheumatic diseases
The new COVID-19 rheumatology registry aims to facilitate international case-reporting of patients with rheumatic diseases who test positive for the virus. The platform offers much needed information on how COVID-19 behaves in immunosuppressed patients and offers risk stratification improvements.
The newly established COVID-19 Global Rheumatology Alliance has launched a registry to facilitate global sharing of information from medical practitioners on how COVID-19 is impacting patients with rheumatic diseases and how the virus interacts with rheumatic disease-associated comorbidities and medications.
Practitioners have been advised to report information from all cases, even if patients have mild or no symptoms. The registry hopes to remedy the lack of information for patients and their healthcare providers about the impact of rheumatic diseases on COVID-19 susceptibility and disease trajectory: “The motivation to get this started was the fact that we didn’t have any information to tell our patients, or to tell our colleagues, about how to manage the patients who were at risk of infection,” explained Philip Robinson (Royal Brisbane Hospital; Queensland, Australia), Chair of the Alliance.
Gathering information on infections in patients with rheumatic diseases may aid risk stratification and improve understanding on the effects of rheumatic medications in combination with the virus. Some patients with ongoing regimes of immunosuppressive medications may need to change the way they access care and appointments to reduce their risk of infection, while patients with active infections cannot receive corticosteroid injections and may not be able to undergo regular blood tests.
Real-world evidence from multiple case studies involving rheumatic medications can now be gathered for use in up-to-date systematic reviews and evaluations of patient care. After comments from the French authorities, the use of non-steroidal, anti-inflammatory medications (frequently prescribed for patients with arthritis) is being assessed . Patient experience can also be monitored thoroughly to improve care and improve precautionary strategies.
Paul Sufka, a Rheumatologist at HealthPartners Medical Group and Regions Hospital (both MN, USA), noted: "The COVID-19 Global Rheumatology Alliance recognized that patients with rheumatic diseases are often treated with immunosuppressive medications, which may influence the risk of contracting COVID-19 or influence disease severity…Ultimately, we felt that building a worldwide registry was the best way to contribute reliable, evidence-based information and resources desperately needed in these rapidly evolving discussions."
 British Society for Rheumatology. Covid-19 (Coronavirus) - update for members.