十大发症研究重点:英国优先设定伙伴关系
Anna C Norton1, Caoimhe Twohig-Bennett2, Maxine Smeaton3
1Epilepsy Research Institute, London, United Kingdom; University of Manchester, Manchester, United Kingdom.
Seizure
|January 22, 2025
概括
这项研究确定了研究的首要优先事项,包括抗药物和中突然意外死亡 (SUDEP),以解决慢性资金不足问题并指导未来的投资. 詹姆斯·林德联盟优先设定伙伴关系涉及5000多个利益相关者.
科学领域:
- 神经学 神经学
- 公共卫生 公共卫生
- 医疗保健服务研究 医疗服务研究
背景情况:
- 与其他神经系统疾病相比,病研究面临着长期的资金不足.
- 詹姆斯·林德联盟 (JLA) 优先设定伙伴关系 (PSP) 方法论使多种利益相关者参与确定研究优先事项.
- 研究院资助了一个国家PSP来解决这个资金缺口.
研究的目的:
- 证明需要增加对研究的投资.
- 识别和优先考虑英国社区内的研究不确定性.
- 以指导未来的政策制定和研究资助申请.
主要方法:
- 根据JLA的方法,一个为期18个月的全国共识项目.
- 与100多个患者组和5000个受影响或在中工作的个人进行接触.
- 通过调查和最后的研讨会,通过调查和最后的研讨会,整理,排名和列出了超过5400个研究重点.
主要成果:
- 提交了超过5400个研究重点,其中主要主题包括抗发作药物,中突然意外死亡 (SUDEP) 和女性.
- 优先事项被分类为可研究的问题,不包括已回答的问题.
- 参与社区广泛代表的最后一场研讨会同意了前十大研究重点.
结论:
- 英国病PSP旨在刺激病患者优先考虑的领域的研究.
- 确定优先事项提供了支持政策讨论和资助申请的必要证据.
- 该倡议旨在改善患者的研究投资和研究成果.
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