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

ABSTRACT:

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 wil

SUBMITTER: Staeva TP 

PROVIDER: S-EPMC13423139 | biostudies-literature | 2026 Jul

REPOSITORIES: biostudies-literature