Literature DB >> 30952391

Digital Interventions to Build a Patient Registry for Rheumatology Research.

William Benjamin Nowell1, David Curtis2, Michelle Thai3, Carole Wiedmeyer2, Kelly Gavigan2, Shilpa Venkatachalam2, Seth Ginsberg2, Jeffrey R Curtis4.   

Abstract

This article aims to describe key issues, processes, and outcomes related to development of a patient registry for rheumatology research using a digital platform where patients track useful data about their condition for their own use while contributing to research. Digital interventions are effective to build a patient research registry for people with rheumatoid arthritis and other rheumatic and musculoskeletal diseases. ArthritisPower provides evidence of the value of digital interventions to build community support for research and to transform patient engagement and patient-generated data capture.
Copyright © 2019 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Data collection; Mobile technology; Patient-generated health data; Patient-reported outcomes; Research recruitment; Rheumatoid arthritis; Self-management; Symptom assessment

Mesh：

Year:  2019        PMID： 30952391     DOI： 10.1016/j.rdc.2019.01.009

Source DB:  PubMed          Journal:  Rheum Dis Clin North Am        ISSN： 0889-857X            Impact factor:   2.670


  15 in total

Review 1.  "Mobile Health" for the Management of Spondyloarthritis and Its Application in China.

Authors:  Xiaojian Ji; Lidong Hu; Yiwen Wang; Yiming Luo; Jian Zhu; Jianglin Zhang; M A Khan; Feng Huang
Journal:  Curr Rheumatol Rep       Date:  2019-11-19       Impact factor: 4.592

2.  Comparison of Web-Based Advertising and a Social Media Platform as Recruitment Tools for Underserved and Hard-to-Reach Populations in Rheumatology Clinical Research.

Authors:  Vladislav Tsaltskan; Katherine Nguyen; Christina Eaglin; V Michael Holers; Kevin D Deane; Gary S Firestein
Journal:  ACR Open Rheumatol       Date:  2022-05-10

Review 3.  Using Registry Data to Understand Disease Evolution in Inflammatory Myositis and Other Rheumatic Diseases.

Authors:  Lily Siok Hoon Lim; Brian M Feldman
Journal:  Curr Rheumatol Rep       Date:  2019-12-12       Impact factor: 4.592

4.  Comparison of an interactive voice response system and smartphone application in the identification of gout flares.

Authors:  Nada Elmagboul; Brian W Coburn; Jeffrey Foster; Amy Mudano; Joshua Melnick; Debra Bergman; Shuo Yang; David Redden; Lang Chen; Cooper Filby; Jeffrey R Curtis; Ted R Mikuls; Kenneth G Saag
Journal:  Arthritis Res Ther       Date:  2019-06-29       Impact factor: 5.156

5.  Digital Tracking of Rheumatoid Arthritis Longitudinally (DIGITAL) Using Biosensor and Patient-Reported Outcome Data: Protocol for a Real-World Study.

Authors:  William Benjamin Nowell; Jeffrey R Curtis; Sandra K Nolot; David Curtis; Shilpa Venkatachalam; Justin K Owensby; Jiat Ling Poon; Amy B Calvin; Carol L Kannowski; Douglas E Faries; Kelly Gavigan; Virginia S Haynes
Journal:  JMIR Res Protoc       Date:  2019-09-26

6.  Stakeholder Development of an Online Program to Track Arthritis-Related Patient-Reported Outcomes Longitudinally: Live Yes! INSIGHTS.

Authors:  Karen E Schifferdecker; Rebecca L Butcher; Erin Knight; Emily Creek; M Suzanne Schrandt; Laura Marrow; Marie Jaffe; Arlene Vinci; Guy Eakin
Journal:  ACR Open Rheumatol       Date:  2020-11-25

7.  Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower.

Authors:  W Benjamin Nowell; Kelly Gavigan; Carol L Kannowski; Zhihong Cai; Theresa Hunter; Shilpa Venkatachalam; Julie Birt; Jennifer Workman; Jeffrey R Curtis
Journal:  Arthritis Res Ther       Date:  2021-02-10       Impact factor: 5.156

8.  Treatment Satisfaction and Decision-making from the Patient Perspective in Axial Spondyloarthritis: Real-World Data from a Descriptive Cross-sectional Survey Study from the ArthritisPower Registry.

Authors:  William Benjamin Nowell; Kelly Gavigan; Theresa Hunter; William N Malatestinic; Rebecca J Bolce; Jeffrey R Lisse; Carol Himelein; Jeffrey R Curtis; Jessica A Walsh
Journal:  ACR Open Rheumatol       Date:  2021-11-10

9.  Concerns, Healthcare Use, and Treatment Interruptions in Patients With Common Autoimmune Rheumatic Diseases During the COVID-19 Pandemic.

Authors:  Michael D George; Shilpa Venkatachalam; Shubhasree Banerjee; Joshua F Baker; Peter A Merkel; Kelly Gavigan; David Curtis; Maria I Danila; Jeffrey R Curtis; W Benjamin Nowell
Journal:  J Rheumatol       Date:  2020-11-15       Impact factor: 4.666

10.  Electronic patient-reported outcome measures using mobile health technology in rheumatology: A scoping review.

Authors:  Jaclyn Shelton; Sierra Casey; Nathan Puhl; Jeanette Buckingham; Elaine Yacyshyn
Journal:  PLoS One       Date:  2021-07-22       Impact factor: 3.240
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