Reuma.pt/vasculitis - the Portuguese vasculitis registry

Area of Science:

• Rheumatology
• Clinical Epidemiology
• Rare Diseases

Background:

• Vasculitides are rare, heterogeneous diseases requiring long-term monitoring.
• The Reuma.pt registry, established in 2008, expanded to include a dedicated vasculitis module in 2014.
• This module facilitates prospective data collection within a European collaborative network.

Purpose of the Study:

• To describe the structure of the Reuma.pt/vasculitis registry.
• To characterize the initial cohort of patients registered in the vasculitis module.
• To establish a national data repository for vasculitis research and clinical management.

Main Methods:

• Web-based electronic clinical record system.
• Prospective data collection from Portuguese rheumatology centers.
• Inclusion of demographics, diagnosis, classification criteria, assessment tools, and treatment data.

Main Results:

• 687 patients from 13 centers were registered; 68.7% were female, mean age 53.4 years.
• Behçet's disease (42.5%) and giant cell arteritis (17.8%) were the most common diagnoses.
• ANCA-associated vasculitis showed the highest Birmingham Vasculitis Activity Score (BVAS) at first visit; biologic treatment varied by diagnosis.

Conclusions:

• Reuma.pt/vasculitis serves as an efficient national data repository for rare vasculitis.
• The registry supports research, clinical trial recruitment, and service planning.
• It has the potential for integration with international databases for broader impact.