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

  • Inflammatory Muscle Disease (I Lundberg and L Diederichsen, Section Editors)
  • Published:
Current Rheumatology Reports Aims and scope Submit manuscript

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.

Summary

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.

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Author information

Authors and Affiliations

  1. Department of Pediatrics, Rady Faculty of Health Sciences, University of Manitoba, 501F-715 McDermot Ave, Winnipeg, Manitoba, R3E 3P4, Canada

    Lily Siok Hoon Lim

  2. Division of Rheumatology, The Hospital for Sick Children, Toronto, Canada

    Brian M. Feldman

  3. Department of Pediatrics, Faculty of Medicine, and Institute of Health Policy Management & Evaluation, Dana Lana School of Public Health, University of Toronto, 555 University Ave, Toronto, Ontario, M5G1X8, Canada

    Brian M. Feldman

Authors
  1. Lily Siok Hoon Lim
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Correspondence to Lily Siok Hoon Lim.

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This article is part of the Topical Collection on Inflammatory Muscle Disease

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Lim, L.S.H., Feldman, B.M. Using Registry Data to Understand Disease Evolution in Inflammatory Myositis and Other Rheumatic Diseases. Curr Rheumatol Rep 22, 2 (2020). https://doi.org/10.1007/s11926-019-0874-1

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  • DOI: https://doi.org/10.1007/s11926-019-0874-1

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