Reuma.pt

Reuma.pt collects and centralizes clinical and research data on vasculitides to support standardized data collection, disease characterization, activity and relapse monitoring, treatment pattern analysis, and mortality tracking.

Key Features:

• Web-based electronic clinical record: Facilitates collection, storage, and analysis of patient data across rheumatology centers.
• Secure encryption: Encrypts sensitive patient information to maintain confidentiality and data integrity.
• Collaborative network integration: Developed under the European Vasculitis Society network to enable prospective data collection and standardized data entry across 79 rheumatology centers nationwide.
• Comprehensive data collection: Captures demographics, diagnosis details, adherence to classification criteria, assessment tools used, treatment regimens, and clinical outcomes.
• Patient demographics and characterization: Contains data from 687 patients across 13 centers with a mean age of 53.4 years at last visit and 68.7% female.
• Disease-specific insights: Provides diagnostic validation and characterization for vasculitides including Behçet's disease and giant cell arteritis.
• Activity and relapse monitoring: Tracks disease activity and relapses using instruments such as the Birmingham Vasculitis Activity Score (BVAS) across conditions including ANCA-associated vasculitis and polyarteritis nodosa.
• Treatment pattern documentation: Records therapeutic use including biologic therapies in giant cell arteritis, ANCA-associated vasculitis, and Behçet's disease.
• Mortality tracking: Records mortality data, including 34 reported deaths among registered patients.

Scientific Applications:

• National epidemiology and research: Serves as a national repository for epidemiological and clinical research on vasculitides.
• International collaboration and data linkage: Supports linking with other databases and collaboration through the European Vasculitis Society network.
• Clinical trial recruitment: Enables identification and recruitment of patients for clinical trials in vasculitis.
• Service planning and benchmarking: Provides structured data to inform service planning and benchmarking in rheumatology.
• Advancing clinical understanding and public health: Supports research to improve patient management and inform public health strategies for vasculitides.

Methodology:

Operates as a web-based electronic clinical record with secure encryption, prospective data collection and central storage, standardized data entry across centers, and use of assessment tools such as the Birmingham Vasculitis Activity Score (BVAS).