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

  • Lily Siok Hoon LimEmail author
  • Brian M. Feldman
Inflammatory Muscle Disease (I Lundberg and L Diederichsen, Section Editors)


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.


Longitudinal cohorts Longitudinal analysis Myositis Registry High-efficiency longitudinal design 


Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflicts of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors


Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Pediatrics, Rady Faculty of Health SciencesUniversity of ManitobaWinnipegCanada
  2. 2.Division of RheumatologyThe Hospital for Sick ChildrenTorontoCanada
  3. 3.Department of Pediatrics, Faculty of Medicine, and Institute of Health Policy Management & Evaluation, Dana Lana School of Public HealthUniversity of TorontoTorontoCanada

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