Nationwide quality register for inflammatory rheumatic diseases in pregnancy

Who is included in the register?

The register is one of very few of its kind in Europe. It was paper-based until ten years ago, when it was digitised and designated a nationwide quality register. A biobank was also established at that time. The register is administered by the Norwegian National Network for Pregnancy and Rheumatic Diseases at the Department of Rheumatology, St Olav's University Hospital in Trondheim, and managed by Central Norway Regional Health Authority. Patients from 19 rheumatology centres throughout Norway are included in the register. Nearly 4000 women and more than 3000 pregnancy outcomes have been recorded. The register includes women with inflammatory arthritis, connective tissue diseases and vasculitis who are under specialist care.

The register has undergone several revisions. Since 2021, variables have been recorded in accordance with recommendations from the European Alliance of Associations for Rheumatology (1). These include validated disease activity measurements, disease modifying anti-rheumatic drugs and patient-reported data on health-related quality of life. Selected pregnancy outcomes are also recorded, including pre-eclampsia, mode of delivery, gestational age and birth weight. Postpartum data on breastfeeding and contraceptive use are also recorded.

Patients should ideally be included in the register in the preconception period. Data are collected at structured outpatient check-ups at the rheumatology centres, according to national and international recommendations (2).