在确定脑研究优先事项时,让有经验的人参与进来:一个范围审查
Evonne Younan1, Sarah McIntyre2, Natasha Garrity2,3
1Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
Developmental medicine and child neurology
|January 25, 2025
概括
在全球范围内,对脑 (CP) 的研究优先设定涉及很少有实践经验的参与者,主要是家长. 未来的努力必须增加代表性和协作,以塑造CP的研究议程.
科学领域:
- 神经学 神经学
- 康复医学 康复医学 康复医学
- 公共卫生 公共卫生
背景情况:
- 大脑麻 (CP) 研究需要有效的优先设定.
- 涉及有实践经验的个人对于相关的研究议程至关重要.
研究的目的:
- 审查全球大脑麻 (CP) 研究优先设定活动.
- 专注于参与者特征,方法,优先事项和CP研究中的合作.
主要方法:
- 采用了JBI范围审查方法.
- 搜索了六个数据库和灰色文献,直到2024年2月.
- 提取了关于研究/参与者特征,方法和优先事项的数据,将优先事项分类为预防/治疗,生活质量和服务提供.
主要成果:
- 来自北美和澳大利亚的五项研究符合纳入标准.
- 参与者主要是家长/照顾者 (12-80%),CP患者较少 (12-25%).
- 调查和研讨会是常见的方法;最佳干预是最常见的研究重点.
结论:
- 这是首次对CP研究重点设定进行全球性审查.
- 参与者的有限多样性 (地理和经验) 需要更广泛的包容性.
- 未来的研究必须加强代表性和协作,以符合多样化的CP社区的需求.
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