为95岁及以上的成年人设计数字研究平台的量身定制方法:超级老人家庭研究。

Sofiya Milman, Aisha Montgomery, Nir Barzilai, Tina Gao, Kara A Wilson, Thomas Perls, Aoife McGovern Leahy, Elizabeth Burgis, Megan Ruxton, Praduman Jain, Alan R Shuldiner
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引用次数: 0

摘要

背景:超级老人家庭研究旨在探讨与百岁老人及其家庭成员健康衰老相关的表型和遗传机制。对一项远程研究设计进行了测试,以证明在这一罕见的高龄人群中使用数字技术进行健康研究的可行性。本文描述了数字研究平台的关键设计要素,该平台用于在老年人队列中提供同意、登记和研究数据收集。方法:通过媒体和社区外展邀请95岁及以上的超级老人、他们的后代和后代的配偶加入研究。参与者通过基于网络的研究应用程序完成注册、同意、提交研究数据并完成远程生物标本收集。平台设计元素和功能适合老年人使用。定性过程评估评估了整个研究工作流程的可用性和参与者数据输入完成情况。结果:对平均年龄98岁(±3 SD)的SuperAgers (n = 160)和平均年龄69岁(±5 SD)的后代/配偶(n = 127)的初步资料进行评价。两组均有97%的参与者成功使用该平台完成资格筛选、eConsent和研究调查。结论:superager及其后代成功使用数字研究平台完成eConsent并提交研究数据。这支持了在老年人群中进行数字化研究的可行性,使用定制的平台设计元素,提高可用性并最大限度地减少输入错误。这些发现可能有助于开发老龄化人口数字化交付研究的最佳实践。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Tailored Approach to Designing a Digital Research Platform for Adults Aged 95 and Older: SuperAgers Family Study.

Background: The SuperAgers Family study aims to investigate phenotypic and genetic mechanisms related to healthy aging in nonagenarians, centenarians, and their family members. A remote study design was tested to demonstrate the feasibility of using digital technology to conduct health research within this rare population of advanced age. This paper describes key design elements of the digital research platform developed to deliver consent, enrollment, and study data collection in a cohort of older adults.

Methods: SuperAgers participants aged 95 years or older, their offspring, and offspring's spouses were invited to join the study via media and community outreach. Participants completed registration, consent, submitted study data, and completed remote biospecimen collection via the web-based study app. Platform design elements and functionality were adapted for use by older-aged adults. Qualitative process evaluation assessed usability and participant data entry completion throughout the study workflow.

Results: Preliminary data from SuperAgers (n = 160) of average age 98 years (±3 standard deviation [SD]) and offspring/spouses (n = 127) of average age 69 years (±5 SD) were evaluated. About 97% of participants in both groups successfully used the platform to complete eligibility screening, eConsent, and study surveys.

Conclusions: SuperAgers and offspring successfully used the digital research platform to complete eConsent and submit study data. This supports the feasibility of conducting digitally enabled research in older-aged populations using tailored platform design elements that increase usability and minimize entry errors. These findings may contribute to the development of best practices for digitally delivered research studies in aging populations.

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