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Pregnancy Registries in Rheumatic Diseases

  • Yvette Meissner,
  • Anja Strangfeld

摘要

Pregnancy registries in rheumatology provide essential data to help improve maternal and neonatal outcomes, particularly given the limited evidence on the safety of therapies and the impact of autoimmune rheumatic disease (AIRDs) in this vulnerable period. These registries prospectively capture detailed longitudinal information, usually spanning the preconception period, pregnancy, and postpartum. They encompass physician- and patient-reported information such as maternal health, disease activity, medication use, obstetric complications, and neonatal development. Over the past two decades, several national and international initiatives have been established. A survey among existing registries provides detailed insights into study design and current numbers, challenges, and future perspectives. Challenges include registry maintenance and the need for sustained funding, methodological complexity, and data completeness. Nonetheless, registries offer unique research opportunities, ranging from drug utilization and disease activity monitoring to patient-reported outcomes and breastfeeding practices. Collaborative projects, such as the European Network of Pregnancy Registries in Rheumatology (EuNeP), highlight the value of harmonized core datasets and pooled analyses, especially for rare diseases and exposures. The future of pregnancy registries lies in methodological refinement, greater international collaboration, digital health data integration, and linkage with biomaterial repositories.