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dc.contributor.authorMeissner, Yvette
dc.contributor.authorStrangfeld, Anja
dc.contributor.authorCostedoat-Chalumeau, Nathalie
dc.contributor.authorFörger, Frauke
dc.contributor.authorGoll, Doreen
dc.contributor.authorMoltó, Anna
dc.contributor.authorÖzdemir, Rebecca
dc.contributor.authorWallenius, Marianne
dc.contributor.authorFischer-Betz, Rebecca
dc.date.accessioned2020-02-19T08:31:46Z
dc.date.available2020-02-19T08:31:46Z
dc.date.created2019-11-19T11:27:52Z
dc.date.issued2019
dc.identifier.citationArthritis Research & Therapy. 2019, 21 (241), 1-9.nb_NO
dc.identifier.issn1478-6354
dc.identifier.urihttp://hdl.handle.net/11250/2642454
dc.description.abstractBackground: 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.nb_NO
dc.language.isoengnb_NO
dc.publisherBMC (part of Springer Nature)nb_NO
dc.rightsNavngivelse 4.0 Internasjonal*
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/deed.no*
dc.titleEuropean network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collectionnb_NO
dc.typeJournal articlenb_NO
dc.typePeer reviewednb_NO
dc.description.versionpublishedVersionnb_NO
dc.source.pagenumber1-9nb_NO
dc.source.volume21nb_NO
dc.source.journalArthritis Research & Therapynb_NO
dc.source.issue241nb_NO
dc.identifier.doi10.1186/s13075-019-2019-3
dc.identifier.cristin1749287
dc.description.localcode© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/)nb_NO
cristin.unitcode1920,9,0,0
cristin.unitcode194,65,30,0
cristin.unitnameKlinikk for ortopedi, revmatologi og hudsykdommer
cristin.unitnameInstitutt for nevromedisin og bevegelsesvitenskap
cristin.ispublishedtrue
cristin.fulltextoriginal
cristin.qualitycode1


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