European Network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collection
European Network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collection
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DOI：
10.1186/s13075-019-2019-3
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发表时间：
2019-11-14
影响因子：
4.9
通讯作者：
Fischer-Betz, Rebecca
中科院分区：
文献类型：
--
作者：
Meissner, Yvette;Strangfeld, Anja;Fischer-Betz, Rebecca
背景欧洲风湿病妊娠登记网(EuNeP)的合作倡议旨在结合全国妊娠登记簿上的数据，以增加对患有炎症性风湿病(IRD)的妇女的妊娠结局以及怀孕和哺乳期间药物安全性的了解。这项研究的目的是描述成员登记册的相似和不同之处。方法从所有登记中收集关于其结构和设计的信息，以及在各自的数据集中可获得的关于人口统计学、产妇结局、治疗、怀孕过程和结局以及儿童发育的参数。此外，还报告了目前的征聘情况。结果4个登记机构(EGR2(法国)、REPRIG(瑞士)、RevNatus(挪威)和Rhekis(德国))前瞻性地和全国性地收集信息。患者可以在受孕前或怀孕期间登记。到目前为止，总共纳入了3500多名患者，并提供了2200例妊娠结局的数据。诊断在各个登记簿中的分布差别很大，所有登记簿只包括三个实体(类风湿性关节炎、牛皮癣关节炎和脊柱性关节炎)。在非特定疾病的数据项中发现了广泛的一致性，但在工具和类别以及数据收集频率方面显示出差异。特定于疾病的数据项的收集不那么均匀。结论虽然本次合作中的寄存器具有相似的设计，但我们在收集的变量中发现了许多差异。这项对目前怀孕登记现状的调查是确定在登记中统一收集的数据以便进行联合分析的第一步。
Background The collaborative initiative of the European Network of Pregnancy Registers in Rheumatology (EuNeP) aims to combine data available in nationwide pregnancy registers to increase knowledge on pregnancy outcomes in women with inflammatory rheumatic diseases (IRD) and on drug safety during pregnancy and lactation. The objective of this study was to describe the similarities and differences of the member registers. Methods From all registers, information about their structure and design was collected, as well as which parameters regarding demographics, maternal outcomes, treatment, course and outcome of pregnancy, and development of the child were available in the respective datasets. Furthermore, the current recruitment status was reported. Results The four registers (EGR2 (France), RePreg (Switzerland), RevNatus (Norway), and Rhekiss (Germany)) collect information prospectively and nationwide. Patients can be enrolled before conception or during pregnancy. To date, more than 3500 patients in total have been included, and data on 2200 pregnancies with an outcome are available. The distribution of diagnoses in the respective registers varies considerably, and only three entities (rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis) are captured by all the registers. Broad consistency was found in non-disease-specific data items, but differences regarding instruments and categories as well as frequency of data collection were revealed. Disease-specific data items are less homogeneously collected. Conclusion Although the registers in this collaboration have similar designs, we found numerous differences in the variables collected. This survey of the status quo of current pregnancy registers is the first step towards identifying data collected uniformly across registers in order to facilitate joint analyses.