Lupus Research Findings Provide Evidence of Progress and Hope for Improved Quality of Life among People with Lupus

Findings from Eight Lupus Foundation of America-supported research studies
presented during the American College of Rheumatology Annual Scientific Meeting

Data from lupus research studies supported by the Lupus Foundation of America (LFA) has provided evidence of progress and hope for solving the cruel mystery of lupus.  Lupus experts presented study data during the American College of Rheumatology (ACR) Annual Scientific Meeting this week in San Francisco. 

The Foundation supports research that is aimed at improving the way potential new lupus drugs are developed and tested, find the causes of lupus, and improve the quality of life for people with lupus, with a special emphasis on pediatric lupus.  Children and teens with lupus often have more serious complications from this misunderstood and unpredictable disease. 

The LFA-supported research included studies to detect and diagnose disorders of the brain and improve self-management among children and teens with lupus, improve the quality of life for people with lupus who have end-stage renal disease, examine rates of infections and hospitalizations among lupus patients receiving immune suppressing therapies, and develop better disease outcome measures for use in clinical research and medical care for all people with lupus. 

The ACR Annual Scientific Meeting is among the world’s largest gatherings of basic research scientists and clinicians during which results of medical research studies in the area of rheumatology are presented for critical peer evaluation.  The Lupus Foundation of America is proud of the lupus experts that it has supported over the years who were invited to present their research findings at this prestigious scientific meeting.  Data from the following studies are being presented:


Disease Outcome Measures


The Lupus Foundation of America Rapid Evaluation of Activity in Lupus (LFA-REAL) Instrument Correlates Between Trained Clinical Investigators and Clinicians, presented by Dr. Anca Askanase, New York University School of Medicine.


Current disease activity measures for lupus can be challenging to score and interpret, making them impractical for use in a busy clinic and difficult to evaluate when used as outcomes in clinical trials. The LFA- REAL is composed of individual visual scales representing different manifestations of lupus. A doctor quickly can rate only the active features in a given patient, immediately generating organ-specific as well as total disease activity scores.  The LFA-REAL shows promise as an efficient tool for clinical trials and for accurate monitoring of patient progress by doctors without special training.



Validation of Patient-Reported Outcomes Measurement Information System (PROMIS®) Modules for Use in Childhood-Onset Lupus, presented by Dr.  Jordan T. Jones, Cincinnati Children's Hospital Medical Center.


Childhood-onset lupus (cSLE) has a substantial negative impact on health-related quality of life (HRQoL).   Patient-reported outcomes measures (PROs) that accurately assess HRQoL and are responsive to change can help improve clinical care and treatment decisions. The goals of the PRO Measurement Information System  (PROMIS) are to decrease the burden to the doctor and patient, increase comparison of diseases, and increase responsiveness of the data collected. The study provided evidence that the pediatric PROMIS short form is valid for use in assessing health-related quality of life among patients who develop lupus during childhood.



Pediatric Lupus


Evidence of Altered Blood Brain Barrier Permeability in Systemic Lupus Erythematosus Using Magnetic Resonance Imaging, presented by Dr. Gaurav Gulati, University of Cincinnati College of Medicine.


Neurocognitive dysfunction is a common complication of lupus that develops during childhood.  Previous research found that the loss of the blood-brain barrier (BBB) integrity, due to inflammation within the brain, allows brain-reactive proteins to enter the central nervous system which can cause cognitive problems.  This study looked for ways that contrast magnetic resonance imaging (MRI) can measure BBB integrity which may help doctors diagnose early onset of cognitive issues in childhood-onset lupus.  The study found evidence that the breakdown of BBB may precede neurocognitive impairment and brain tissue loss, and being able to measure that loss may allow for earlier intervention and treatment.


Treatment and Outcomes in Pediatric SLE Patients in South Africa, presented by Dr. Laura Lewandowski, Duke University Medical Center

African children with lupus are believed to be at high risk for poor outcomes based on race, socioeconomic status, and age.  This study established the first registry of this high risk pediatric lupus (pSLE) population in South Africa and presented the first comparison of treatment and outcomes between groups of patients in South African and North America.  The study found that children in South Africa receive different therapy and demonstrate a striking increase in poor renal outcomes, end stage renal disease, and irreversible organ damage compared to their North American peers.  This data may have an impact on future treatment decisions for all children and teens with lupus.


Impact of Online Education and Social Media Intervention for Self-Management in Adolescents with SLE, presented by Dr. Lisabeth Scalzi, Hershey Medical Center


Self-management (SM) skills are vital to the physical and emotional health of adolescents with lupus which may also affect successful transition to independent self-care as an adult. This study evaluated the effectiveness of an online educational course for young adults with lupus as well as a social media site where participants could discuss other issues.  The data showed that those participants who participated in the SM group had significantly better empowerment outcomes as compared to the control subjects suggesting that online resources can benefit children with lupus.


Mood Disorder Is Highly Prevalent in a Multi-Ethnic Urban Pediatric Lupus Cohort, presented by Dr. Tamar Rubinstein, Albert Einstein College of Medicine


While mood disorder, most commonly manifesting as depression and anxiety symptoms, is often reported in pediatric lupus patients, prevalence rates vary widely. Many published studies did not use validated tools to systematically screen patients.  In this study, the investigators used validated screening tools for depressive symptoms and anxiety symptoms, and found depressive and anxiety symptoms are prevalent in this group of pediatric lupus patients with high disease activity from an urban, primarily minority, and low-income group.  Thoughts of suicide and self-harm were also not uncommon. The results may help improve screening for these disorders among pediatric lupus patients.



Health-Related Quality of Life


Comparative Rates of Serious Infections and All-Cause Mortality among Systemic Lupus Erythematosus Patients Receiving Mycophenolate Mofetil Versus Azathioprine, presented by Dr. Candace H. Feldman, Brigham and Women's Hospital


People with lupus are at high risk of infections partly from use of immunosuppressive drugs. The comparative risks of infections have not been thoroughly studied.  The investigators looked at Medicaid data for adults with lupus from 47 states and Washington, DC, who were receiving Mycophenolate Mofetil (MMF) or Azathioprine (AZA) to determine the rates of infections and deaths among this population.  The data showed that while the rates of hospitalized infection and all-cause mortality were marginally higher among MMF vs. AZA new users, there were no significant differences in the rates between the patients receiving either drug. 


Rates of Hospitalization for Infection and Related Mortality by Race/Ethnicity and Sex Among Patients with End-Stage Renal Disease Due to Systemic Lupus Erythematosus, presented by Dr. Candace H. Feldman, Brigham and Women's Hospital


Recent studies show that lupus nephritis (lupus-related kidney disease) patients have more than two-fold higher incidence of serious infections than the overall lupus patient population. Using the U.S. Renal Data System, the national registry of end-stage renal disease (ESRD) patients, the investigators identified 12,533 patients with lupus-related ESRD and 6,064 with linked Medicare claims. The data showed a high burden of hospitalization for infection and related mortality with similar infection rates to pre-ESRD lupus nephritis patients. Female, Black and Native American patients were at increased risk of infection. The results can help to improve future treatment decisions to reduce the number of serious infections among lupus-related ESRD patients.



More information about the American College of Rheumatology Annual Scientific Meeting is available through the ACR website


Lauren Topf,, 917-940-1778

Duane Peters,, 202-349-1145

About Lupus

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body.  It is difficult to diagnose, hard to live with and a challenge to treat.  Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure.  Its health effects can range from a skin rash to a heart attack.  Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to diseases of similar scope and devastation.  

About the Lupus Foundation of America

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, the Foundation leads the fight to improve the quality of life for all people affected by lupus. Learn more about lupus, Lupus Science & Medicine Journal and the Lupus Foundation of America at For the latest news and updates, follow us on Twitter and Facebook.