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Digital Interventions to Build a Patient Registry for Rheumatology Research

Author

Nowell WB1, Curtis D2, Thai M3, Wiedmeyer C2, Gavigan K2, Venkatachalam S2, Ginsberg S2, Curtis JR4. Rheum Dis Clin North Am. 2019 May;45(2):173-186. doi: 10.1016/j.rdc.2019.01.009.

Author Information

1 Global Healthy Living Foundation, 515 North Midland Avenue, Upper Nyack, NY 10960, USA. Electronic address: bnowell@ghlf.org.

2 Global Healthy Living Foundation, 515 North Midland Avenue, Upper Nyack, NY 10960, USA.

3 Media Cause, 147 Natoma Street, San Francisco, CA 94105, USA.

4 Division of Clinical Immunology & Rheumatology, University of Alabama at Birmingham, Faculty Office Tower, 510 20th Street South #834, Birmingham, AL 35294, USA.

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.