Longterm studies in rheumatoid arthritis--the German experience

Area of Science:

• Rheumatology
• Health Services Research
• Clinical Data Management

Background:

• The German Collaborative Arthritis Centres maintains a national registry for inflammatory rheumatic diseases.
• This registry collects annual clinical data and patient questionnaires.

Purpose of the Study:

• To outline the objectives and applications of the rheumatological database.
• To identify healthcare deficits, trends, and practice variations in rheumatology.
• To assess disease burden and quality of care.

Main Methods:

• Utilizing a continuing registry of patients with inflammatory rheumatic diseases.
• Annual data collection via clinical datasheets and patient questionnaires.
• Analysis of collected data for healthcare trends, treatment practices, and disease burden.

Main Results:

• Identified significant differences in disease-modifying antirheumatic drug (DMARD) use between specialists and non-specialists.
• Revealed deficits in non-medicinal therapies.
• Documented considerable practice variations in both drug and non-drug treatments.
• Found a high burden of disease, including pain, disability, and early retirement, in specific patient subgroups.

Conclusions:

• The database is a valuable tool for health services research in rheumatology.
• Identified disparities in care and treatment variations underscore the need for quality improvement initiatives.
• The lack of a specific follow-up procedure limits longitudinal data to patients in continuous care.