在肌缩侧面硬化症的研究获取障碍
Elisa Giacomelli1, Erica Scirocco1, Max Higgins1
1Sean M. Healey and AMG Center for ALS & the Neurological Clinical Research Institute, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
概括
随着肌缩侧面硬化症 (ALS) 影响越来越多的人,临床试验参与障碍正在上升. 本报告概述了分散试验和伙伴关系等战略,以改善获得和加速ALS治疗的发展.
科学领域:
- 神经学 神经学
- 临床研究方法论 临床研究方法论
- 公共卫生 公共卫生
背景情况:
- 全球人口老龄化增加了肌缩侧面硬化症 (ALS) 的发病率和流行率.
- 越来越多的ALS患病率给临床研究参与带来了挑战.
- 现有的障碍阻碍了对至关重要的ALS临床研究的获取.
研究的目的:
- 确定限制参与ALS临床研究的关键挑战.
- 要突出可用的资源,以提高ALS临床试验的访问.
- 提出克服ALS研究参与障碍的实际策略.
主要方法:
- 审查ALS临床研究当前的挑战和资源.
- 重点是教育和利益相关者参与战略.
- 关于分散和远程参与模式的建议.
主要成果:
- 分散的试验模型和远程参与选项可以改善访问.
- 患者导航员,咨询委员会和数字工具加强了外展.
- 加强各利益相关者团体之间的伙伴关系至关重要.
结论:
- 解决无障碍问题和培养信任对于推进ALS治疗至关重要.
- 患者,护理人员,研究人员和行业之间的协作努力可以加速治疗的发展.
- 实施拟议的战略将有助于使研究与社区需求保持一致,并克服参与障碍.
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