Meinders Marjan J, Heathers Laura, Ho King Chung, Russell Laura, Li Chris, Bloem Bastiaan R, Marks William J, Kapur Ritu
Radboud university medical center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Center of Expertise for Parkinson and Movement Disorders, Nijmegen, The Netherlands.
Indiana University School of Medicine, Department of Medical and Molecular Genetics, Indianapolis, Indiana, IN, USA.
NPJ Parkinsons Dis. 2025 Jun 6;11(1):152. doi: 10.1038/s41531-025-01016-w.
Wearable technologies enable real-time, continuous, noninvasive data collection, where long-term compliance is essential. The Personalized Parkinson Project (PPP) and the Parkinson's Progression Markers Initiative (PPMI) utilized the Verily Study Watch. Participants, including people diagnosed with Parkinson's disease (PD), prodromal PD, and healthy controls, were instructed to wear the watch for up to 23 h daily without data displaying or reporting data back to the participant. Compliance measures and user experiences were evaluated. A centralized support model identified barriers to data collection and enabled proactive outreach. Median daily wear time was 21.9 h for PPP and 21.1-22.2 h per day for PPMI over 2 years. Participants were highly motivated contributing to PD research. These results highlight strategies for achieving strong engagement without providing individual data. This approach offers valuable insights for study designs where returning data to participants could introduce bias or affect the data integrity.
可穿戴技术能够实现实时、连续、无创的数据收集，而长期的依从性至关重要。个性化帕金森项目（PPP）和帕金森病进展标志物计划（PPMI）使用了Verily研究手表。参与者包括被诊断患有帕金森病（PD）、前驱期帕金森病的患者以及健康对照者，被要求每天佩戴手表长达23小时，且不显示数据或向参与者反馈数据。对依从性措施和用户体验进行了评估。一种集中式支持模式确定了数据收集的障碍，并实现了主动推广。在两年时间里，PPP的日均佩戴时间中位数为21.9小时，PPMI为每天21.1 - 22.2小时。参与者积极参与帕金森病研究。这些结果突出了在不提供个人数据的情况下实现高度参与的策略。这种方法为那些向参与者返回数据可能会引入偏差或影响数据完整性的研究设计提供了有价值的见解。
