发展非洲囊性纤维化协作网络:呼吁采取行动
Leah Ratner1, Hugues Abriel2, Muriel Helmers3
1Brigham and Women's Hospital, USA; Harvard Medical School, USA.
概括
一个新的泛非洲网络正在解决非洲的囊性纤维化 (CF) 诊断不足问题. 这种合作旨在改善整个非洲大陆的CF识别,诊断和护理,重点是公平和包容性.
科学领域:
- 全球健康
- 遗传学和基因组学
- 医疗公平
背景情况:
- 囊性纤维化在非洲的诊断严重不足,原因是诊断有限,认识低,卫生优先事项相互竞争.
- 尽管有越来越多的证据表明,非洲CF患者的存活率仍然非常低.
- 非洲的诊断不足影响了全球的CF研究和理解,
研究的目的:
- 描述一个泛非洲性囊性纤维化协作网络的建立.
- 解决整个非洲大陆CF识别,诊断和护理方面的严重差异.
- 促进包容性,脱殖民主义和以公平为中心的CF研究和患者护理方法.
主要方法:
- 形成一个包含临床医生,研究人员和倡导者的网络.
- 通过电子邮件和WhatsApp在英语和法语中开发和传播42个问题REDCap调查.
- 使用参与式方法收集成员优先事项,沟通和数据收集的见解.
主要成果:
- 这个网络已经成长为14个非洲国家的44个成员.
- 调查得到了来自8个国家的13名成员的回答.
- 确定的主要主题包括跨国合作,倡导,建立泛非洲CF注册,能力增强和资金动员.
结论:
- 这篇论文呼吁在非洲扩大CF诊断,研究和护理.
- 强调需要采用包容性,脱殖民主义和以公平为中心的方法.
- 呼吁跨学科和国际合作, 改善对所有患有CF的人的护理.
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