作为下一代注册表,AccessPD将加速帕金森病研究
Yun-Hsuan Chang1, Maria Teresa Periñan2,3, Matt Wilson1
1UMEDEOR LTD, 8 Warner Yard, London, EC1R 5EY, UK.
NPJ Parkinson's disease
|March 20, 2024
概括
通过电子健康记录和短信,AccessPD成功地招募了帕金森病 (PD) 患者. 这个平台为未来的PD研究和临床试验建立了一个有价值的注册表.
科学领域:
- 神经学 神经学
- 临床研究信息学
- 患者登记册 患者登记册
背景情况:
- 招聘挑战显著阻碍了帕金森病 (PD) 研究进展.
- 现有的研究平台往往缺乏全面的患者数据集成.
- 有效的患者鉴定和参与对于推进PD研究至关重要.
研究的目的:
- 介绍AccessPD,这是一个新的平台,旨在创建一个庞大的帕金森病患者注册表.
- 为了证明平台在收集丰富,综合的患者数据以进行研究方面的能力.
- 展示AccessPD在患者分层和临床试验招募中的实用性.
主要方法:
- 在初级保健中使用电子健康记录 (EHR) 来识别潜在的参与者.
- 采用短信与个性化链接参与者推广.
- 通过在线问卷收集电子患者报告结果 (ePROs).
- 整合ePRO数据与现有的EHR信息.
主要成果:
- 在平台推出前六个月内招募了200名参与者.
- 在200名参与者中获得了191名的高后续响应率.
- 描述了常见的诊断前和诊断后的情况以及经常处方的药物.
- 根据共识标准,确定了设备辅助疗法的潜在候选人.
结论:
- 在帕金森病研究中,AccessPD有效克服了招聘障碍.
- 该平台展示了一种独特的能力,可以将各种数据源连接起来,以实现患者分层.
- 访问PD促进了纵向研究,并加强了对帕金森病临床试验的招聘.
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