Using Registry Data to Understand Disease Evolution in Inflammatory Myositis and Other Rheumatic Diseases

Abstract

Purpose of review: While rheumatic disease registries collect longitudinal patient information, longitudinal analytic methods are usually not applied to these data. This review will showcase advances in longitudinal designs/analyses, and ways to leverage digital technologies to recruit and retain more registry participants.

Recent findings: We will show how the accelerated cohort and longitudinal multiform methods are more efficient than traditional longitudinal designs. We illustrate how a smartphone app is used to recruit participants for a new rheumatic disease registry in the USA. Examples of newer longitudinal techniques applied in myositis and childhood-onset lupus are also presented. Applying high-efficiency longitudinal design and analysis let investigators leverage the rich registry information collected over time. They allow more sophisticated and precise questions to be asked about the disease course of myositis and other rheumatic diseases, which in turn will inform the practice of clinicians and important decisions made by stakeholders.

Keywords: High-efficiency longitudinal design; Longitudinal analysis; Longitudinal cohorts; Myositis; Registry.