The Lupus Nexus – the unique lupus registry, biorepository, and information exchange platform spearheaded by the Lupus Research Alliance (LRA) – published its first manuscript today in the journal Lupus Science & Medicine describing this powerful resource for the scientific, clinical, and patient communities to help shorten the path from discovery to improved treatments and care for those affected by lupus.
Lupus impacts millions of people worldwide and is highly heterogeneous, making developing effective therapies particularly difficult. The Lupus Nexus addresses this challenge by providing researchers and clinicians, from academia and industry, access to a high-quality, longitudinal patient dataset with linked biospecimens and cellular/molecular data that can drive new insights.
One of the core components of the Lupus Nexus is the Lupus Landmark Study – a clinical study that will recruit and follow up to 3,500 patients with different types of lupus for five years. Currently, there are 800 participants in the study, over 6 million data points and 16,000 unique biospecimens. Registry data within the Lupus Nexus comprises medical information, clinician-reported and patient-reported outcomes, while the biorepository includes blood derivatives, urine, saliva, stool, and tissue. A variety of -omics data on the baseline biospecimens is also being generated and is available to Lupus Nexus users. All data and biospecimens are available to the research community for a broad range of uses and analyses through the Data Repository Exchange and Analytics platforM (DREAM).
“By delivering high-quality, representative, reusable, and interoperable data, of considerable breadth and depth, Lupus Nexus offers a unique research resource that is poised to accelerate research discovery and clinical development,” Teodora Staeva, PhD, Chief Scientific Officer of the Lupus Research Alliance and lead author, said.
The published paper also underscores the Lupus Nexus’s robust patient engagement. People living with lupus have been involved in shaping the Lupus Nexus from the outset, providing critical input on protocol design and operations, contributing to a 95% participant retention rate two and a half years into the study, and ensuring the platform reflects their experiences and priorities.
“Centering people living with lupus in the design of the Lupus Nexus and its work strengthens both the quality and relevance of the research,” said Devon Kelly, Director of the Lupus Nexus at the Lupus Research Alliance. “It ensures that data collected not only reflects the clinical aspects of lupus, but also the real-world impact of the disease.”
Learn more about the Lupus Nexus here.
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