Lupus Nephritis Research Program
Lupus is an incurable autoimmune disease that causes inflammation and tissue damage in all parts of the body. Lupus nephritis, which can damage and scar the kidneys and other parts of the renal system, is one of the most common and serious complications of lupus.
Between 50 and 60 percent of people with lupus will develop lupus nephritis within 10 years of their lupus diagnosis, and the rate is even higher among children with the disease. Lupus nephritis is more prevalent in African Americans and Hispanics than in Caucasians, and develops more often in males than in females.
If not adequately controlled, lupus nephritis can lead to kidney failure, the need for chronic dialysis or kidney transplantation, and potentially death.
With good response to treatment, people with lupus nephritis can live a normal lifespan. However, this complication of lupus requires lifelong care. This is why lupus nephritis is a family affair -- one that affects spouses, children, parents, siblings, and other relatives, all of whom have questions and are on a quest for answers.
Diagnosing Lupus Nephritis is Challenging -- and Treatments Aggressive
It can take many years and visits to many different doctors before a diagnosis of lupus is made; it can take even longer before lupus nephritis is recognized. In its early stages there are very few signs that anything is wrong and symptoms are typically non-specific to lupus nephritis, such as swelling in feet, ankles, legs, hands, and/or eyelids, and changes in appearance of the urine. Because there are so few symptoms, people with lupus can have significant damage to their kidneys even before they are diagnosed with lupus. Furthermore, the only way to determine the extent of tissue damage and scarring is with a kidney biopsy, an invasive procedure that can have serious side effects.
Since the body cannot function without the kidneys, lupus nephritis requires aggressive treatments, many of which have terrible side effects. Currently, there is no “gold standard of care” for treating lupus nephritis, and treatment decisions can vary widely. The American College of Rheumatology (ACR) recently issued new guidelines for identifying, treating, and managing lupus nephritis in adults. The new guidelines codify what expert rheumatologists and nephrologists have learned over the last two decades about lupus nephritis. However, few studies to date have investigated the impact of lupus nephritis on children, or how they respond to disease management decisions developed for adults. There remains an urgent need to tailor lupus nephritis treatments specifically for children.
Our Approach and Focus
For decades, the LFA has been ahead of the curve for research on lupus. Our national research program, Bringing Down the Barriers™, has long supported studies that have expanded the understanding of lupus in several important areas, including genetics, heart disease prevention and treatment, neuropsychiatric lupus, lupus in minority populations, lupus biomarkers, and lupus nephritis.
An even greater national agenda has been set for research on lupus in children. In 2006, the LFA established the Michael Jon Barlin Pediatric Research Program with the generous support of the Wallace H. Coulter Foundation, in memory of Michael Jon Barlin, who passed away at the age of 24 following a long battle with lupus. With those funds, the LFA became the first and only lupus advocacy organization in the United States with a dedicated childhood lupus research agenda, and the only organization with a robust research effort focused on lupus nephritis in children specifically.
The LFA continues to break new ground by funding research to better understand lupus nephritis in both children and adults. We have awarded numerous grants to leading investigators whose lupus nephritis studies have the potential to lead to the next breakthrough in the field. For example:
- Assessment of side effects of drugs being used to treat lupus nephritis
- Development and implementation of specialized treatment guidelines, innovative health care delivery models, and quality of life measures
- Development of new blood tests to improve the tracking of lupus nephritis in children • Evaluation of the role of genetics in response to lupus nephritis treatment outcomes
- Identification and characterization of biomarkers that indicate lupus nephritis existence, disease activity, or specific pathologies
- Research into therapeutic interventions and disease mechanisms of lupus nephritis
The LFA takes a strategic approach to investigating lupus nephritis by calling on some of the greatest minds in the field to address critical issues that have long stood in the way of progress, and that hold the greatest promise for accelerating our understanding of how lupus affects the kidneys in adults and children. As we have shown, the need to expand clinical and basic research developments for lupus nephritis is increasingly urgent. Yet, despite the significant need to better understand lupus nephritis, and find new, safe, and effective ways to manage and treat it, research funding is extremely scarce. Certainly, substantial progress has been made, but there is still so much work to be done -- and we can’t do it alone! We need your support to continue and expand our search for the next breakthrough that will improve care for people of all ages who suffer from lupus nephritis. Help us make further progress. Visit lupus.org/donate to learn more.
For more information about the LFA and our National Research Program, visit www.lupus.org.