European Network of Pregnancy Registers in Rheumatology (EuNeP)

Objectives of the Project

The goal for all people with inflammatory rheumatic disease is to live a normal life without limitation in daily live. This includes family planning and having children. There is a high unmet need of robust data on the outcomes of pregnancies 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. Experts in Europe who already run prospective pregnancy registers in women with IRD will be brought together to evaluate the nature and extent of existing data as well as the methods of data collection and
to identify gaps and drawbacks for joint data analyses.

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Facts and Figures

Project Lead
R. Fischer-Betz MD, PhD
Heinrich-Heine University

A. Strangfeld MD
German Rheumatism Research Centre
FOREUM research grant: € 298.000
2017, Duration 3 years

Meet the Team

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

Patient Voice

Patient participation in all meetings is crucial to explore which questions regarding pregnancies are most relevant for the patients.

Two female patients will be involved in identifying research questions of interest and in defining the core data set, specifically the patient-reported outcomes.

We plan to have at least two meetings a year and several telephone conferences to coordinate the research and to agree on research questions to be answered by parallel or joint data analyses.