European network of pregnancy registers in rheumatology (EuNeP)

Concept

The goal for all patients with inflammatory rheumatic disease (IRD) is to live a normal life without limitation in daily routine, including family planning and having children. Pregnancy counselling for these patients could be improved if better information on pregnancy outcomes and drug safety were available. However, robust data on pregnancies in women with IRD and on the safety of a substantial number of drugs taken before or during pregnancy are limited. Especially regarding rare outcomes or diseases, open questions can only be clarified by collaborative analysis of several databases. To foster joint approaches, pregnancy registers in France, Germany, Norway and Switzerland with prospective and multicentre data collection initiated the European Network of Pregnancy Registers in Rheumatology (EuNeP).

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

Project Lead

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

  • A collaborative network of experts who already run pregnancy registers in Europe was established
  • The nature and extent of the existing data as well as the method of data collection was evaluated and compared
  • A common core data set with a minimum of data items to be collected by pregnancy registers in rheumatology was defined and published as EULAR recommendation
  • A methodological approach for joint data analyses was developed including data harmonisation
  • A first joint data analysis with pooled data of all registers on pregnancy outcomes in women with axial spondyloarthritis was performed

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.

We have explored the structure of the collaborating registers, and how data is collected within registers. We have also collected information on the number and characteristics of patients with different rheumatic diseases enrolled in the registers so far. 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 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 our network was a collaborative analysis using data from all four registers. Data from pregnant women with axial spondyloarthritis were analysed. It was investigated, how many babies were born at term and how the health of these neonates was. In addition, disease activity during the course of pregnancy was investigated. Using the data of all four EuNeP registers together increased the strength of the results.

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

2021

  • AB0472: Pregnancy in women with 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).
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Project Map