Lupus Nexus: A Registry, Biorepository, & Data Exchange Platform to Foster Global Collaborations, Accelerate Research, & Advance Precision Medicine 2260377

Abstract

Abstract Introduction Systemic lupus erythematosus remains a disease of high unmet medical need. The Lupus Nexus (LNx) is a lupus registry, biorepository, and data exchange platform that addresses this by providing a community-wide access point to longitudinal, highly curated, centralized clinical datasets linked to biospecimens and cellular/molecular data. Methods The LNx includes a prospective, longitudinal observational study, the Lupus Landmark Study (LLS), that is currently enrolling up to 3,500 people living with lupus into four cohorts: new-onset, active lupus nephritis, extra-renal flare, and prevalent/quiescent SLE with a 5-year follow-up. The clinical data include parameters such as patient- and clinician-reported outcomes (PRO and CLINRO), full medical history, social history and determinants of health, and environmental exposures, among others. Linked biospecimens include DNA, RNA, urine, plasma, serum, saliva, stool, and tissue, and all are available to the research community. A small portion of the biosamples is currently being used for analyses including genomics, transcriptomics, and proteomics. Results As of October 2025, there are over 570 enrolled participants and over 42,000 stored biospecimens. The registry is reflective of the population affected by lupus. Genetic, transcriptomic, and proteomic assays are underway to generate foundational scientific data, Foundational Analyses (FA), to stimulate research efforts. Conclusion The LNx is a unique, community-wide resource for both researchers and those living with lupus. This biorepository is open to the entire lupus research community and is poised to catalyze advances in understanding disease etiology, genetic drivers and mechanistic heterogeneity in SLE. Funding Source n/a Topic Categories Basic Autoimmunity (BA)