Lupus Research Alliance announces largest prospective study of SLE, new patient registry
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Key takeaways:
- The Lupus Landmark Study will enroll and follow 3,500 patients over 5 years.
- The study is part of the Lupus Nexus, a collaborative patient-centric registry, biorepository and data portal.
The Lupus Research Alliance, alongside its research affiliate Lupus Therapeutics, have announced the launch of what would be the largest prospective observational study into lupus, as well as a new patient registry and data resource.
The Lupus Landmark Study, which the LRA called, “the largest study of its kind in lupus,” will prospectively recruit and longitudinally follow 3,500 adults diagnosed with systemic lupus erythematosus across North America. This study, in turn, will act as a “key component” of the Lupus Nexus, a patient-centric, collaborative registry aimed at improving lupus research and drug development “through unprecedented information exchange capabilities,” according to an LRA press release.
“We are thrilled to launch the Lupus Landmark Study as the first phase of the Lupus Nexus,” Teodora Staeva, PhD, vice president and chief scientific officer of the LRA, said in the release. “This is a significant milestone for the lupus community and an opportunity to enable major breakthroughs in our understanding and treatment of lupus. We are immensely grateful to all our collaborative partners who have brought us to this stage, including people with lupus, clinicians, researchers, industry, government and nonprofit entities.”
Enrollment for the Lupus Landmark Study will begin later this year. Patients included in the study will be followed for 5 years.
The Lupus Nexus, meanwhile, will serve as a patient registry, a biorepository and a data portal. According to the LRA, the Lupus Nexus will be a source of “highly curated” clinical data, patient reported data, biological samples, and raw analyzed data, with the goal of facilitating global collaboration, innovation and precision medicine approaches in lupus.
“A critical part of unlocking new insights into this complex disease is greater collaboration and data sharing among the global lupus research community,” S. Sam Lim, MD, MPH, lead investigator of the Lupus Landmark Study, professor of medicine at Emory University, and chief of rheumatology at Grady Memorial Hospital, in Atlanta, said in the release. “My hope is that with the Lupus Landmark Study and the Lupus Nexus, we’ll not only have better data, but we'll also be able to better collaborate to find more treatments that will enable more personalized care for people with lupus.”
Other features of the Lupus Nexus will include a clinical coordinating center and biorepository. According to the LRA, researchers will be able to correlate deidentified data from the Landmark Study with analyzed biosample data to identify or validate drug targets, biomarkers, and hypotheses. This, in turn, could improve the understanding of lupus heterogeneity and the development of better diagnostic, prognostic and treatment strategies.
Embleema and Azenta Life Sciences have signed on to work with the LRA as the clinical coordinating center and biorepository, respectively. In addition, DxTerity Diagnostics, Inc. will conduct biomarker analysis using their proprietary DxCollection MicroCollection Device and Modular Immune Profile platform, according to the release.
“Not only is it important to understand lupus from the vantage point of each person living with this disease, but it’s important that researchers and patients have a voice in these important initiatives,” Ruth Wilson, a member of the Lupus Nexus steering committee and the executive committee of the LRA’s Young Leaders Board, said in the release. “It's exciting to see this study come to life and an honor to provide my perspective and feedback as both a researcher and lupus patient advocate.”
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