Through ongoing research and collaboration, lupus care has progressed from a fatal diagnosis to a manageable chronic condition. However, to develop effective personalized therapies and ultimately find a cure, continued funding is critical to understand the disease's complexity.
Clinical trials help researchers develop new therapies for lupus, which is vital for improving symptom management, preventing complications, and ultimately elevating the quality of life for patients.
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These programs where established because of the organizations who have advocated for the establishment of a dedicated funding stream for lupus research.
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The Lupus Foundation of America (LFA)
The LFA advances lupus research by providing grants and initiating collaborative projects that address the most urgent needs in the field. Key programs include:
Predict and Prevent Lupus Research Grant: This initiative funds studies focused on identifying high-risk patients and improving early diagnosis to prevent severe disease outcomes.
Michael Jon Barlin Pediatric Research Program
A program dedicated to funding childhood lupus research, with a focus on critical areas like kidney disease, quality of life, and neuropsychiatric disease.
Clinical Trials Network
The LFA partners with the technology company Antidote to give patients access to clinical trials, encouraging broader participation in research.
Research Accelerated by You (RAY)
An LFA data platform and initiative where patients can share their lupus experiences, providing researchers with valuable patient data to accelerate the design of clinical trials and the development of new treatments.
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The Lupus Research Alliance (LRA)
The world's largest non-governmental funder of lupus research, with a mission to develop new diagnostics, treatments, and ultimately a cure. The organization operates with a unique funding model where its Board of Directors covers all administrative and fundraising costs, ensuring 100% of all donations directly support research programs.
It spearheads collaborative initiatives to accelerate scientific progress:
Lupus Clinical Investigators Network (LuCIN)
A network of over 50 academic research centers that collaborates with pharmaceutical companies to conduct clinical trials.
The Lupus Nexus (LNx)
A registry and biorepository that collects patient data and biological samples to speed up the drug development process.
Lupus Industry Council (LIC)
This council fosters collaboration among pharmaceutical and biotech companies to overcome hurdles in drug development.
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​The National Institutes of Health (NIH)
supports lupus research through several initiatives, primarily led by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). As the largest public funder of biomedical research, the NIH supports both internal and external studies.
Intramural Research Program (IRP)
The NIAMS Lupus Clinical Trials Unit (LCTU) conducts its own translational and clinical research, focusing on the causes, treatment, and prevention of lupus.
Extramural Research Funding
The NIH also provides funding to hundreds of non-federal scientists at universities and other institutions across the country. These researchers investigate the causes of lupus, such as:
Genetic factors
Environmental triggers
Sex differences
Biomarkers
Public-Private Partnerships
The NIH participates in large-scale collaborations, including the Accelerating Medicines Partnership (AMP) Rheumatoid Arthritis (RA)/Lupus Network. This initiative joins public and private organizations to expedite discoveries in lupus and related diseases.
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Congressionally Directed Medical Research Programs (CDMRP)
This is a unique partnership between Congress, the military, and the public to fund targeted medical research.
Department of Defense (DOD) Centers for Disease Control and Prevention (CDC) U.S. Department of Veterans Affairs (VA)
Lupus Research Program (LRP)
First established in 2017, the LRP funds high-impact, innovative research that addresses significant gaps in lupus diagnosis and treatment.
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Medical University of South Carolina (MUSC) Lupus Research Group
An academic research program dedicated to advancing the understanding and treatment of lupus.
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