[ComPaRe:一个让患者成为研究人员的平台!]
Leslie Toko-Kamga1, Viet-Thi Tran1
1Centre d'épidémiologie clinique de l'Hôtel-Dieu, AP-HP, Paris, France.
La Revue du praticien
|October 23, 2025
概括
研究患者社区 (ComPaRe) 是一个由58000名患有慢性疾病的成年人组成的法国电子队列. 这个平台使患者能够通过贡献数据和加速科学发现,积极参与研究.
科学领域:
- 数字健康数字健康
- 患者报告的结果
- 慢性疾病研究 慢性疾病研究
背景情况:
- 大约40%的法国成年人患有慢性疾病.
- 研究患者社区 (ComPaRe) 是法国的一个大型电子队列.
- 慢性疾病需要广泛的研究,以更好地管理和治疗.
研究的目的:
- 为患者参与的研究建立一个协作平台.
- 通过使用患者报告的数据,加快慢性疾病的研究.
- 为公共研究团队促进数据收集和研究项目开发.
主要方法:
- 建立了一个由58,000名患有慢性疾病的成年人组成的电子队列.
- 参与者填写有关疾病,治疗和症状的在线问卷.
- 该平台允许研究人员访问现有数据或请求新数据收集.
主要成果:
- 在ComPaRe,有58,000名患有慢性疾病的成年参与者.
- 超过270名研究人员在超过95个研究项目中使用ComPaRe数据.
- 该平台捕捉了患者报告的结果和体验测量.
结论:
- 康帕雷是法国慢性病研究的重要资源.
- 该平台促进了患者和研究人员之间的合作.
- 患者参与研究加速了科学进步,并提高了对慢性病的理解.
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