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临床网络内的罕见内分泌疾病的电子报告:来自EuRRECa项目的结果
S R Ali1,2, J Bryce2, A L Priego-Zurita3
1Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK.
Endocrine connections
|October 30, 2023
概括
欧洲罕见内分泌疾病注册表 (EuRRECa) 电子报告注册表 (e-REC) 成功捕获了欧洲各地的罕见内分泌疾病数据. 这种电子监控系统是可行的和可接受的监控这些条件.
科学领域:
- 内分泌学 在内分泌学.
- 罕见疾病是一种罕见的疾病.
- 公共卫生监督是对公共卫生的监督.
背景情况:
- 欧洲罕见内分泌疾病登记处 (EuRRECa) 为罕见内分泌疾病 (Endo-ERN) 欧洲参考网络 (ERN) 建立了一个电子报告登记处 (e-REC).
- 在欧洲范围内监测罕见的内分泌疾病,由于它们的发生不频繁,因此存在重大挑战.
研究的目的:
- 报告e-REC平台在3.5年的运行经验和可行性.
- 评估e-REC对罕见内分泌疾病监测的可接受性和实用性.
主要方法:
- 通过一个定制的平台,通过Endo-ERN条件每月电子报告新的遭遇.
- 由参与中心的临床医生从2018年7月到2021年12月收集的数据.
主要成果:
- 22个国家的61个中心报告了数据,其中29个儿科和32个成人中心的中位数每月报告.
- 报告共有9715例成人和4243例儿科病例.
- 在儿童中,性发展条件 (40%) 和跨性别病例 (58%) 是最常见的. 在成年人中,垂体疾病 (44%),主要是垂体腺瘤 (69%),是最常见的.
结论:
- 电子REC系统已经证明越来越可接受地捕获有关新罕见内分泌疾病遭遇的数据.
- 该平台促进了持续监测,临床基准测试,并支持研究设计和临床试验招聘.
- 在欧洲各个中心观察到罕见内分泌疾病发病率的显著差异.
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