The rheumatry registry: design and data collection methods.

BACKGROUND

Rheumatic disease registries systematically collect real-world longitudinal data, improving patient care and research. Despite the high burden of rheumatic diseases, national registries are scarce in the Middle East. Rheumatology Research Center, with support from Iran’s Ministry of Health, launched Rheumatry in 2016 as the country’s first national rheumatic disease registry.

OBJECTIVES

To outline the design, governance, and data collection framework of Rheumatry.

METHODS

Rheumatry is a secure, web-based, multicenter registry led by Tehran University’s Rheumatology Research Center. It enrolls patients meeting standardized criteria for major rheumatic diseases (rheumatoid arthritis, Systemic lupus erythematosus, systemic sclerosis, ankylosing spondylitis, Takayasu arteritis, etc.) from over 26 centers nationwide. Comprehensive electronic case report forms (intake and follow-up) capture demographics, disease history, clinical features, laboratory and imaging results, standardized disease activity measures, patient-reported outcomes, and treatment data.

RESULTS

As of September 2025, Rheumatry includes ~ 11,900 patients and 26,100 visits. Its multi-disease scope, inclusion of Takayasu arteritis, and alignment with international standards (ACR/EULAR criteria, MedDRA coding) are notable innovations. The registry supports systematic monitoring of disease courses, therapies, and outcomes, addressing a regional gap in real-world evidence.

CONCLUSIONS

Rheumatry’s national-scale infrastructure provides detailed longitudinal data on diverse rheumatic diseases in Iran. By facilitating research, surveillance, and quality improvement, it bridges a critical information gap in the Middle Eastern context.