Digital Interventions to Build a Patient Registry for Rheumatology Research

Rheum Dis Clin North Am. 2019 May;45(2):173-186. doi: 10.1016/j.rdc.2019.01.009.


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.

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

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Humans
  • Patient Reported Outcome Measures*
  • Patient Selection
  • Research Design / trends*
  • Rheumatology* / methods
  • Rheumatology* / trends
  • Self-Management / methods
  • Telemedicine / methods*