关于欧洲参考网络与行业之间合作的"Together4RD"立场声明
Victoria Hedley1, Matt Bolz-Johnson2, Ines Hernando2
1Newcastle University, Newcastle Upon Tyne, UK. vjhedley@hotmail.co.uk.
Orphanet journal of rare diseases
|September 5, 2023
概括
尽管有几十年的政策,但欧洲很少有罕见病治疗方法. 欧洲参考网络 (ERN) 具有潜力,但需要行业的合作,以加快对罕见疾病的研究和开发.
科学领域:
- 罕见疾病的研究和开发.
- 欧洲卫生政策 欧洲卫生政策
- 多利益相关者合作合作.
背景情况:
- 对于罕见疾病的治疗方法有限 (5-6%),影响超过3000万欧盟患者.
- 欧洲的研究和创新在全球范围内落后,需要在罕见疾病研发方面进行范式转变.
- 欧洲参考网络 (ERN) 对罕见疾病有希望,但需要强有力的支持和合作.
研究的目的:
- 分析限制欧洲参考网络 (ERN) 和行业互动的障碍.
- 提出加强在罕见疾病研究中多方利益相关者合作的战略.
- 介绍Together4RD的举措,以促进有效的伙伴关系和解决未满足的需求.
主要方法:
- 对ERN-行业参与现有障碍的分析.
- 审查案例研究和合作框架.
- 开发和试验多利益相关者互动模型.
主要成果:
- 确定了阻碍ERN与行业合作的有形和感知障碍.
- 探索了有效伙伴关系的潜在框架和试点计划.
- 强调需要为ERN提供财务,技术,政策和基础设施支持.
结论:
- 克服ERN-行业障碍对于在欧洲推进罕见疾病研发至关重要.
- Together4RD旨在通过案例研究,框架和试点项目促进合作.
- 加强多方利益相关者之间的互动对于为罕见疾病提供改变生活的治疗方法至关重要.
关键词:
欧洲储备网络 (ERN) 是一个非常重要的网络.欧洲参考网络 欧洲参考网络网络化 网络化 网络化公私伙伴关系是公私伙伴关系.罕见疾病是一种罕见的疾病.罕见疾病是一种罕见的疾病.研究研究研究研究研究研究.更多相关视频
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