European network of pregnancy registers in rheumatology (EuNeP)

Concept

There is a high unmet need of robust data on the outcomes of pregnancies in women with inflammatory rheumatic diseases (IRD) and on the safety of a substantial number of drugs when used before or during pregnancy. The aim of our project is to combine existing data and to improve future pregnancy counseling by using better information on pregnancy outcomes and drug safety.

Therefore, experts from France, Germany, Norway and Switzerland who already run prospective pregnancy registers in women with IRD came together.

Facts and figures

Project Lead
R Fischer-Betz
Heinrich-Heine University

A Strangfeld
German Rheumatism Research Centre
rebecca.fischer@med.uni-duesseldorf.de
strangfeld@drfz.de
FOREUM research grant: € 298.000
2017–2021

Meet the team

R Fischer-Betz
Heinrich-Heine University
A Strangfeld
German Rheumatism Research Centre
N Costedoat-Chalumeau
Université Paris-Descartes
A Molto
Groupe Hospitalier Cochin-Saint Vincent de Paul
M Wallenius
University of Trondheim
F Förger
University Hospital and University of Bern
Y Meissner
German Rheumatism Research Centre

Final Results

There is a high unmet need of robust data on the outcomes of pregnancies in women with inflammatory rheumatic diseases (IRD) and on the safety of a substantial number of drugs when used before or during pregnancy. The aim of the project was to combine existing data and to improve future pregnancy counselling by using better information on pregnancy outcomes and drug safety. Therefore, experts from France, Germany, Norway and Switzerland who already run prospective pregnancy registers in women with IRD came together.
Within this collaboration, these main objectives were fulfilled:

  • To bring together experts who already run pregnancy registers in Europe and to evaluate the nature and extent of the existing data as well as the method of data collection
  • To define a common core data set for pregnancy registers in rheumatology, which was published as EULAR recommendation
  • A first pooled joint data analysis on pregnancy outcomes in women with axial spondyloarthritis

 

Publications

  • Meissner Y., Rudi T., Fischer-Betz R., Strangfeld A. Pregnancy in women with psoriatic arthritis: A systematic literature review of disease activity and adverse pregnancy outcomes. Semin Arthritis Rheum 2021; 51(3): 530-8
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  • Meissner Y., Fischer-Betz R., Andreoli L., Costedoat-Chalumeau N., De Cock D., Dolhain RJEM, Forger F., Goll D., Molto A., Nelson-Piercy C., Ozdemir R., Raio L., Rodriguez-Garcia S. C., Sciascia S., Wallenius M., Zbinden A., Zink A. and Strangfeld A. EULAR recommendations for a core data set for pregnancy registries in rheumatology. Ann Rheum Dis 2021;80(1):49-56.
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  • Meissner Y., Strangfeld A., Costedoat-Chalumeau N., Forger F., Goll D., Molto A., Ozdemir R., Wallenius M. and Fischer-Betz R. European Network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collection. Arthritis Res Ther 2019;21(1):241.
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EULAR Abstracts

2018

  • FRI0601: The nature and extent of data items collected across European pregnancy registers – first results of the European network of pregnancy registers in rheumatology (EUNEP)

2019

  • OP0326: Development of a standardized minimal core data set for pregnancy registers in rheumatology – results of a EULAR task force

2020

  • FRI0558: Pregnancy outcomes in patients with axial spondyloarthritis – a first joint analysis of a European collaboration of pregnancy registers
  • AB0804: Pregnancy and psoriatic arthritis: A systematic literature review of disease activity and adverse pregnancy outcomes

Go to EULAR Abstract Archive

ACR Abstracts

2018

  • AB2426: Defining a Standardized Core Data Set for Pregnancy Registers in Rheumatic Diseases – an European Approach Abstract 2426. Arthritis Rheumatol. 2018; 70 (suppl 10). Accessed March 28, 2019.
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2020

  • AB1498: Pregnancy outcomes in patients with axial spondyloarthritis – a first joint analysis of a European collaboration of pregnancy registers. Arthritis Rheumatol. 2020; 72 (suppl 10).
    Read more

Lay Summary

The aim of this project was to bring together experts from across Europe who run pregnancy registers in rheumatology. Four European registers collaborate in the European Network of Pregnancy Registers in Rheumatology (EuNeP). Those registers are designed to collect information of patients with rheumatic diseases that wish to conceive, during and after pregnancy in order to gain more knowledge about how the rheumatic disease influences pregnancy and vice versa.
The structure of the collaborating registers were explored, and how data is collected within registers. The exploration of the existing data was very important and a prerequisite for the project's aim to analyse data from different registers together. Building upon this, a so called “core data set” for registers and observational studies that collect data of pregnant women with rheumatic diseases was defined . The “core data set” is like a template containing a list of variables (=data items) that should be collected in the same way by all pregnancy registers for rheumatic diseases. This will help to harmonize data across registers and make them more comparable to facilitate joint data analyses.
One of the analyses in the network was a joint analysis with data from all four registers. Data from pregnant women with axial spondyloarthritis were analysed and the disease activity during pregnancy was investigated, how many babies were born at term and the health of the neonates. Using the data of all four EuNeP registers together increased strength of the results.