THE EUROPEAN League Against Rheumatism (EULAR) has collated and released its first consensus-based recommendations for prospective pregnancy registries in rheumatology, comprising 51 items covering maternal information and treatment.
Several European pregnancy registries have been established to collect and analyse data with different inflammatory rheumatology diseases; however, there is a need for collaborative analyses in research areas including pregnancy course in rare diseases, which require larger study cohorts than are often available in single registries. To combine data set analyses, the study designs must show some similarities including data collection and patient inclusion. EULAR recruited a taskforce to establish a data set for registries and observational studies on pregnant women with rheumatic diseases. They began by carrying out two-round Delphi surveys and face-to-face meetings with a total of 73 experts and 17 members of the task force. Of the participants in the Delphi surveys, 69% were female, 84% were rheumatologists, 5% each were obstetricians and epidemiologists, 3% were patients, and 3% midwives, with a global representation of 14 countries.
A consensus on 51 items was achieved encompassing three topics: ‘maternal information’, including age, height, education level, weight before pregnancy, alcohol and smoking status, disease characteristics and prevalent comorbidities; ‘pregnancy’, with factors including obstetric history, pregnancy course, delivery outcome, and neonatal outcomes; and ‘treatment’, which considered drugs used 12 months prior to conception, rheumatic treatments used during and after pregnancy, and all other drugs used during pregnancy. For rheumatoid arthritis, spondyloarthritis, juvenile idiopathic arthritis, systemic lupus erythematosus, and other connective tissue conditions, disease-specific laboratory markers and disease activity measurements were recommended by the task force.
The taskforce maintain that the data set was short and simple and focussed on “the most important information,” owing to differences in registry design and healthcare systems between countries. “We hope that this proposal will be useful when establishing new registries and also increase the willingness of rheumatologists, other healthcare professionals, and patients to contribute to the registries and provide the necessary data,” commented Ms Yvette Meissner, German Rheumatism Research Center Berlin, Berlin, Germany and colleagues from the taskforce.
