DCM项目门户:DCM研究项目的直接参与者平台
Elizabeth S Jordan1,2, Phoenix L Grover1,2, Jay Lin1,2
1The Davis Heart and Lung Research Institute, The Ohio State University, Columbus, OH.
medRxiv : the preprint server for health sciences
|July 10, 2023
概括
一个新的数字门户简化了基于家庭的扩张性心肌病 (DCM) 遗传研究的招生. 该工具增强了DCM研究的参与者招募和沟通.
科学领域:
- 遗传学 是一个遗传学.
- 心脏病学 心脏病学
- 数字健康数字健康
背景情况:
- 扩展性心肌病 (DCM) 研究需要大量的家庭队列进行遗传研究.
- 传统的招生方法在实现实质性的家庭参与方面面临挑战.
- 创新的数字解决方案对于在遗传研究中有效招聘至关重要.
研究的目的:
- 开发和评估一个数字平台,DCM项目门户网站,用于基于家庭的DCM遗传研究.
- 促进直接向参与者进行电子招聘,同意和沟通.
- 提高基因研究招生效率和可访问性.
主要方法:
- 设计了一个由三个模块组成的,自动引导的在线门户 (注册,资格,同意).
- 在门户网站内集成信息资源和定制消息.
- 从先前的DCM研究中评估参与者特征,以告知门户网站设计和用户体验.
主要成果:
- 该DCM项目门户网站被设计为一个用户友好的,可适应的数字工具.
- 在之前的DCM研究中,大多数参与者报告说,他们很容易获得书面健康信息,并且对填写表格充满信心.
- 互联网接入很普遍,尽管在老年人和某些种族群体中存在差异.
结论:
- 数字招生工具为提高基因研究的获取和效率提供了重要机会.
- 该DCM项目门户网站作为家庭基因研究中的数字方法的模型.
- 这个平台可以促进更大,更多样化的家庭参与DCM研究.
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