Global Rheumatology Registries and Cohorts

Area of Science:

• Rheumatology
• Epidemiology
• Autoimmune Diseases

Background:

• Global rheumatology registries and cohorts have been established over four decades.
• These initiatives have significantly improved the understanding of systemic autoimmune disease epidemiology.
• They have also facilitated the development of new classification criteria, outcome measures, and disease activity assessments.

Purpose of the Study:

• To review the development and impact of global rheumatology registries and cohorts.
• To highlight the progress made in describing systemic autoimmune diseases.
• To identify the need for enhanced global representation in research efforts.

Main Methods:

• Review of existing literature and data from global rheumatology registries and cohorts.
• Analysis of the contributions of these registries to classification criteria and outcome measures.
• Assessment of global representation and identification of gaps.

Main Results:

• Registries have enhanced the description of systemic autoimmune disease epidemiology.
• New classification criteria, outcome measures, and disease activity states have been proposed.
• Despite progress, significant gaps in global representation persist, particularly from low- and middle-income countries.

Conclusions:

• Global rheumatology registries are crucial for advancing the study of systemic autoimmune diseases.
• Continued efforts are needed to ensure inclusive global participation and data collection.
• The examples provided offer a potential roadmap for achieving truly global coverage in rheumatology research.