Neuropsychiatric Lupus Research Program

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.

Despite this recognition, involvement of the nervous system is one of the least understood areas in rheumatology today. Even after decades of research, we still do not know enough about the mechanisms of how lupus attacks the nervous system or how to prevent damage.

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.

Living with NPSLE is a family affair that also affects spouses, children, parents, siblings, and other relatives. Those whose lives have been interrupted and sometimes devastated by NPSLE, whether in themselves or in a loved one, are on a quest for answers -- and hope. In every way, the need to expand clinical and basic research developments for NPSLE is urgent.

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 understanding of lupus in many important areas, including genetics, heart disease prevention and treatment, neuropsychiatric lupus, lupus in minority populations, and lupus biomarkers. The LFA is the only lupus advocacy organization in the United States with a robust research effort focused on NPSLE specifically, and we are breaking new ground by funding research to better understand how lupus affects the brain and nervous system in both children and adults. 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

In Summary

The LFA takes a strategic approach to investigating neurological and psychiatric symptoms in both adults and children with lupus by calling on some of the greatest minds in the field to address issues that hold the greatest promise for accelerating our understanding of how lupus affects the brain. Yet, despite the significant need to better understand NPSLE, and to find new, safe, and effective ways to manage and treat the many disabling symptoms, 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 our efforts searching for the next breakthrough that will improve care for people of all ages who suffer from neurological and psychiatric symptoms caused by the debilitating disease known as lupus. 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.