使用大规模在线搜索查询和报告病例数据,对罕见疾病的流行病学研究
Lei Zhang1, Ye Jin2, Jiayu Li3
1Department of Nephrology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Science and Peking Union Medical College, Beijing, China.
Orphanet journal of rare diseases
|August 9, 2023
概括
在线搜索查询为罕见疾病监测提供了一种新的方法. 与病例数据一起分析搜索趋势提供了稳定的疾病排名,并有助于为流行病学研究分类罕见疾病.
科学领域:
- 公共卫生 公共卫生
- 流行病学 流行病学
- 数字健康数字健康
背景情况:
- 罕见疾病对全球健康构成重大挑战.
- 对于罕见疾病的详细流行病学数据往往很少.
- 互联网搜索查询正在成为疾病监测的有价值工具.
研究的目的:
- 探索一种用于罕见疾病流行病学研究的新方法.
- 利用大规模的在线搜索查询和国家罕见疾病病例数据.
- 评估搜索查询数据对于罕见疾病监测的有用性.
主要方法:
- 从2016年到2019年收集全国罕见疾病搜索日志.
- 从中国国家数据库 (2016-2019) 获取罕见疾病病例数据.
- 分析和比较来自搜索数据和病例数据的疾病排名.
主要成果:
- 在研究中包括120种罕见疾病.
- 搜索数据和病例数据都表明,从2016年到2019年,罕见疾病的趋势在增加.
- 搜索和报告病例数据之间的疾病排名通常是稳定的和一致的,超过50%的疾病显示排名差异为-20到20.
- 根据搜索和病例数据排名之间的关系,罕见疾病可以分为两个类别.
结论:
- 在线搜索查询是罕见疾病检测和监测的宝贵新资源.
- 将罕见疾病分为两类,可以为不同的流行病学研究策略提供信息.
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