Lupus Nexus: developing a prospective registry, biorepository and data exchange platform to foster global collaborations, accelerate research innovation and advance precision medicine in lupus

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INTRODUCTION: SLE remains a disease of high unmet medical need. Protean manifestations and the lack of clear understanding of aetiology, pathogenesis and disease subgroups make it difficult to develop and employ targeted therapeutic approaches. Community-wide access to a longitudinal, highly curated patient dataset with linked biospecimens and cellular/molecular data is critical to enable advances and is now provided by Lupus Nexus (LNx). In this study, we describe the development of this unique resource with exemplary patient engagement. METHODS AND ANALYSIS: LNx, developed with guidance from over 100 partners, includes a prospective, longitudinal observational study, the Lupus Landmark Study (LLS), that will enrol up to 3500 adults living with lupus into four cohorts and will follow them over 5 years. The registry data comprises medical information, clinician-reported and patient-reported outcomes while the biorepository includes whole blood, urine, saliva, stool and tissue which are available to the research community for a broad range of analyses. Importantly, since all raw data from the biospecimen analyses will be deposited in LNx, it will amass a deep and comprehensive dataset over time. As of 25 March 2026, there are 705 enrolled participants (13.3% new onset, 27.4% extrarenal flare, 23.3% active lupus nephritis and 35% prevalent cases, with 37.6% black, 38% white and 12.6% Asian/Pacific Islander patients). Over 15 400 unique samples have been collected and specific analyses are underway.All data and samples from LNx are available via its Data Repository Exchange and Analytics platforM (DREAM). Importantly, a dedicated patient portal within DREAM enables participants to view their study data, connect with others and learn about the research emerging from projects using LNx. TRIAL REGISTRATION NUMBER: NCT05934149.

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