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EULAR recommendations for a core data set for pregnancy registries in rheumatology
Yvette Meissner1, Rebecca Fischer-Betz2, Laura Andreoli3,4
1Epidemiology and Health Care Research, German Rheumatism Research Center Berlin, Berlin, Germany y.meissner@drfz.de.
Annals of the Rheumatic Diseases
|October 15, 2020
Summary
A European League Against Rheumatism (EULAR) task force established a core dataset for pregnancy registries to improve data collection and collaboration for women with inflammatory rheumatic diseases (IRD). This facilitates research on pregnancy outcomes and treatment safety in IRD patients.
Area of Science:
- Rheumatology
- Obstetrics
- Reproductive Health
Background:
- Urgent need for data on pregnancy outcomes in women with inflammatory rheumatic diseases (IRD).
- Collaborative research is essential for rare diseases and outcomes.
- Data heterogeneity limits joint analyses.
Framework:
- European League Against Rheumatism (EULAR) Task Force defined a core dataset.
- Minimum data items for rheumatology pregnancy registries.
- Covers pregnancy and 28-day neonatal phase for women with IRD.
Implementation:
- Stepwise process: two-round Delphi survey and face-to-face meeting.
- 64 multidisciplinary stakeholders from 14 countries participated.
- Consensus reached on 51 main items: maternal, pregnancy, and treatment information.
Implications:
- First consensus-based core dataset for prospective rheumatology pregnancy registries.
- Stimulates and facilitates multinational collaborations.
- Aims to increase knowledge on pregnancy course and treatment safety in IRD patients.
Keywords:
antirheumatic agentsautoimmune diseasesbiological therapyepidemiologyhealth careoutcome assessmentMore Related Videos
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