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 are brought together.

Facts and figures

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

MD A Strangfeld
German Rheumatism Research Centre
strangfeld@drfz.de, rebecca.fischer@med.uni-duesseldorf.de
FOREUM research grant: € 298.000
2017 - 2020

Meet the team

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

Objectives

  • To evaluate the nature and extent of existing data
  • To define a common core data set as primary outcome
  • To perform and publish a first joint data analysis on pregnancy outcomes as secondary outcome
  • To enable newly setup pregnancy registers to use the methods and approaches already developed

Patient voice

Patient participation is crucial to explore which questions regarding pregnancies are the most relevant for the patients. Two female patients (one with rheumatoid arthritis and one with systemic lupus erythematosus) are involved in identifying research questions of interest and in defining the core data set, with specific focus on the patient-reported outcomes.

Interim results

Data items and methods of data collection in the participating registers were evaluated and summarized. Patient perspectives regarding pregnancy registers and their needs for information were identified with a survey. Currently, the core data set is being developed and will be published as a EULAR recommendation.

Publications

  • Meissner Y, Strangfeld A, Costedoat-Chalumeau N, et al. 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). Annals of the Rheumatic Diseases 2018;77:824.
    Read more
  • Meissner et al. Defining a standardized core data set for pregnancy registers in rheumatic diseases – an approach of the European Network of Pregnancy registers in rheumatology (EuNeP). 10th international conference on reproduction, pregnancy and rheumatic diseases, 2018
  • Meissner Y, Strangfeld A, Costedoat-Chalumeau N, Förger F, Moltó A, Wallenius M, Fischer-Betz R. Defining a Standardized Core Data Set for Pregnancy Registers in Rheumatic Diseases – an European Approach [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/defining-a-standardized-core-data-set-for-pregnancy-registers-in-rheumatic-diseases-an-european-approach/. Accessed March 28, 2019.
    Read more

Abstracts EULAR 2019

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