New Guidelines for Core Data Collection in Systemic Lupus Erythematosus Care

Systemic lupus erythematosus (SLE) is a complex autoimmune disorder characterized by diverse clinical features and unpredictable disease progression, posing challenges for accurate diagnosis and effective management. Recognizing the need for standardization, the European Alliance of Associations for Rheumatology (EULAR) has developed new recommendations to establish a core dataset that ensures comprehensive clinical care and enhances scientific research in SLE.

Given the heterogeneity of SLE and variations in data collection across different registries and studies, using big data techniques can significantly improve our understanding of the disease. Big data involves the analysis of large, complex datasets stored in various formats and locations, such as data lakes, enabling advanced methods like machine learning to identify patterns and patient subgroups, which could be targeted in clinical trials.

To facilitate this, EULAR assembled a diverse panel of 25 stakeholders from 14 countries. The panel conducted an extensive literature review and an anonymous online survey to prioritize 99 potential data items. Their work culminated in a published guideline that outlines 73 core items for clinical care and an additional eight items designated for research purposes.

The core dataset is organized into three phases based on the timing of data collection: initial/urgent, annual, and ongoing assessments. The initial phase includes demographic information, disease history, and serology, while the annual phase reviews comorbidities, disease damage, and progression. The ongoing assessments focus on laboratory results, treatment outcomes, patient-reported measures, and disease activity. The research extension encompasses classification criteria, hematological damage, vaccination status, disease control, medication adherence, quality of life, and work productivity.

Dr. Johanna Mucke, lead author and researcher at Ruhr-University Bochum, emphasized the significance of standardized datasets, stating, "Harnessing big data through consistent data collection will be essential in accelerating research and improving patient outcomes." EULAR believes the proposed dataset is practical for clinical settings, as many items require only periodic evaluation rather than frequent updates. This standardization will enable better benchmarking and comparative studies across centers, ultimately leading to improved care and quality of life for individuals living with SLE.

For more detailed information, the full guidelines are published in the August 2025 issue of the a0Annals of the Rheumatic Diseasesa0. Read the study here.

Source: https://medicalxpress.com/news/2025-08-core-datasets-lupus-erythematosus.html