Ankylosing spondylitis clinical registries: principles, practices and possibilities

Area of Science:

• Rheumatology
• Clinical Research
• Patient Registries

Background:

• Longitudinal patient registries are crucial for understanding spondyloarthritis (SpA).
• Existing registries have limitations in scope and geographic coverage.
• A unified approach is needed to enhance data acquisition and patient cohort analysis.

Purpose of the Study:

• To propose the development of a comprehensive, longitudinal registry for North American spondyloarthritis (SpA) patients.
• To consolidate data from existing SpA registries and programs.
• To establish a robust platform for SpA research and patient support.

Main Methods:

• Building upon three established registries: Prospective Study of Outcomes in Ankylosing Spondylitis, Program to Understand the Longterm Outcomes of Spondyloarthritis (PULSAR), and University Health Network Spondyloarthritis Program.
• Collaboration with the Spondylitis Association of America.
• Implementing a prospective, systematic, protocol-driven data acquisition approach.

Main Results:

• The proposed combined registry aims to capture a large cohort of SpA patients across North America.
• It will serve as a resource for patient advocacy, education, incidence/prevalence studies, and demographic profiling.
• The registry is expected to complement clinical goals and enhance patient care.

Conclusions:

• A rigorously developed, combined longitudinal registry is essential for advancing spondyloarthritis research.
• This initiative will provide a valuable resource for understanding SpA epidemiology and improving patient outcomes.
• The proposed registry has the potential to significantly benefit the SpA patient community and clinical practice.