Neuropsychiatric Lupus (NPSLE) Research
The American College of Rheumatology (ACR) has identified 19 different ways that lupus can affect nervous system, including the brain. This complication of lupus is known as neuropsychiatric lupus, or NPSLE. Compiled research suggests that as many as 90 percent of adults, adolescents, and children with lupus will at some time experience the devastating effects of NPSLE.
Symptoms of NPSLE Can Be Disruptive -- and Life-Threatening
The most common complication of NPSLE is cognitive dysfunction, meaning difficulty concentrating or reasoning and problems with memory and recall. These symptoms can disrupt all aspects of life, including the ability to plan, work, organize, and learn, visual-spatial processing, and language. For children and adolescents especially, this effect of NPSLE on school performance is a major concern. Added to this burden is that NPSLE occurs frequently, early in the course of the disease, and with great severity in children with lupus.
Yet other symptoms can be life-threatening, including seizures and strokes. These manifestations can be a major cause of illness, severely diminished quality of life, and even brain damage and death.
To date, no test exists that can definitively indicate when lupus is affecting the nervous system. We do know, however, that NPSLE can be present even when lupus is inactive in other organs. And while medications are available to treat symptoms of nervous system involvement, not all of those with NPSLE respond to the current treatments. Furthermore, the side effects from the treatments can be quite serious.
Our Approach and Focus
For decades, the Lupus Foundation of America has been ahead of the curve for research on lupus. We are the only lupus organization with a robust research effort focused on NPSLE. We have awarded numerous grants to leading investigators whose NPSLE studies have the potential to lead to the next breakthrough in the field. For example:
- Analysis of common manifestations of people of all ages with lupus
- Assessment of cognitive impairment and white matter changes in the brain
- Development and validation of tools (including biomarkers and advanced brain imaging techniques) to measure NPSLE disease activity and damage, to track disease progression and prognosis, and to monitor the effects of treatment
- Development of standardized methods to assess the long-term impact of NPSLE and effects of treatment over time
- Assessment of the impact of NPSLE on health-related quality of life
- Evaluation of combinations of antibodies that may predict NPSLE in children
- Evaluation of spinal fluid antibodies and proteins that may help detect nervous system complications
- Identification of risk factors for cognitive dysfunction • Identification of psychiatric and psychosocial morbidities associated with NPSLE
- Examination of the mechanisms of NPSLE in homogeneous patient populations