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Updated: Jan 14, 2026

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患者驱动的罕见疾病研究网络:颠覆研究

Jo Balfour1, Laura B Cowley2,3, Georgina Windsor4,5

  • 1Cambridge Rare Disease Network, Cambridge, UK.

BMJ open
|October 27, 2025
PubMed
概括

罕见疾病研究网络 (RDRN) 赋予患者领导研究的权力,解决罕见疾病的未满足需求. 这个网络促进了合作,推动了以患者为中心的研究和改善结果.

关键词:
基于社区的参与式研究数字技术 数字技术 数字技术健康 公平 卫生 公平组织发展 组织发展患者参与 患者参与罕见疾病 罕见疾病

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