Global Healthy Living Foundation, 515 North Midland Avenue, Upper Nyack, NY 10960, USA.
Global Healthy Living Foundation, 515 North Midland Avenue, Upper Nyack, NY 10960, USA.
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.
本文旨在描述使用数字平台为风湿病学研究开发患者登记处的关键问题、流程和结果,患者可以在该平台上跟踪与其病情相关的有用数据,既可供自身使用,也可用于研究。数字干预措施对于为类风湿关节炎和其他风湿及肌肉骨骼疾病患者建立患者研究登记处是有效的。ArthritisPower 提供了证据表明,数字干预措施对于建立社区对研究的支持以及转变患者参与和患者生成数据的获取是有价值的。