W132 - Lupus Nexus: A Lupus Registry, Biorepository, and Data Exchange Platform to Foster Global Collaborations, Accelerate Research Innovation, and Advance Precision Medicine

Abstract Text: Systemic lupus erythematosus (SLE) is a complex disease with significant unmet medical needs. Its heterogeneity and poorly understood etiology, pathogenesis, and subgroups hinder the development of targeted therapies. Advancing SLE research requires a centralized, longitudinally curated patient dataset linked with biosamples and molecular data. To meet this need, the Lupus Research Alliance launched Lupus Nexus (LNx)—a registry, biorepository, and data-exchange platform.

Developed with input from over 100 stakeholders, including scientists, funders, and patients, LNx is anchored by the Lupus Landmark Study. This prospective, longitudinal study is currently enrolling up to 3,500 patients into four cohorts—new-onset SLE, extra-renal flare, active lupus nephritis, and prevalent SLE—tracking them over five years, generating extensive datasets paired with biospecimens. Clinical data include clinician- and patient-reported outcomes, medical and serologic histories, medication use, vaccinations, and other key information.

To date, 221 participants have been enrolled from sites across the United States and Canada: 13% new-onset, 20% lupus nephritis, 25% extra-renal flare, and 42% prevalent. Participant demographics reflect the broader population, and over 12,000 biosample aliquots have been collected. Targeted genetic, transcriptomic, and proteomic assays will generate foundational scientific data to support preliminary research efforts and further utilization of LNx resources. Additional foundational datasets include quantitative auto-antibody measurements, microbiome metagenomics, and medication level assessments.

LNx provides researchers access to biospecimens, robust datasets, and advanced computational tools while enabling participants to view their data and connect with others. This initiative aims to accelerate precision medicine in lupus, driving significant advances in diagnosis and treatment. www.lupusnexus.org