HOME
Leading the way to a cure

ACR 2012 Special Report 7

ACR Special Report: Chicago, IL 2011

Systemic Lupus Erythematosus Registries: Providing Critical Information

Much of what we’re learning about lupus these days comes from patient registries, essentially, large databases that contain numerous types of information, including patient symptoms, treatments, side effects, biomarkers, and genetic analyses. They are invaluable for helping to identify possible problems with treatments, discover new treatment possibilities, or highlight certain clues regarding the progression or regression of the disease the deserve additional investigation. You don’t have to sign up to be in a registry; all information is anonymous and doctors provide the data. In addition to the pregnancy study highlighted here, other registry-related studies included:

Biologics use in SLE in 23 Centers — Data from the International Registry for Biologics In SLE (IRBIS)

Although belimumab (Benlysta) is the only approved systemic drug for lupus, physicians use numerous such agents off label. This study analyzed the use of biologics among 359 patients in 23 centers participating in the International Registry for Biologics in SLE (IRBIS). The study found that rituximab (Rituxan) was the main biologic used. Other patients were treated with belimumab, epratuzumab, abatacept (Orencia), etanercept (Enbrel), and adalimumab (Humira), some after participating in clinical trials for the drug. The researchers focused on the outcomes in those patients taking rituximab, finding that about 40% were also receiving cyclophosphamide. Most patients were started on rituximab because they had developed lupus nephritis or blood-related complications. After one year, patients on rituximab had improved SLEDAI scores and taking lower doses of glucocorticosteroids, even without adding any other immunosuppressants.xii

Key point: Rituximab can provide important benefits for patients with lupus that is not responding to traditional immunosuppressant drugs.

Large Scale Analysis of Serum Tumor Necrosis Factor Alpha Levels in Systemic Lupus Erythematosus

Blood levels of tumor necrosis alpha (TNFa) are high in some patients with lupus but not in others. Researchers studied 653 patients from the Lupus Family Registry and Repository at the Oklahoma Medical Research Foundation to evaluate any correlation between TNF-a levels and disease severity. They found that higher levels of TNF-a were associated with higher levels of the inflammatory protein interferon alfa (IFN-a) regardless of the patient’s ethnic background. However, African Americans were most likely to have the high TNF-a/IFN-a levels, with European-Americans least likely, while European Americans had the greatest proportion of low TNF/low IFN. While IFN-a was associated with the characteristic autoantibodies of lupus, only TNF-a was associated with IFN-a, suggesting some relationship between TNF-a and the characteristics of the disease.xiii

Key point: TNF-a levels may provide an important biomarker for tracking lupus disease progression. More studies are needed, however.

The Georgia Lupus Registry: Differences in Age-Specific Incidence Rates Between Black and White Females with SLE

The Georgia Lupus Registry is a population-based registry designed to estimate the incidence and prevalence of lupus in Atlanta, GA. Researchers reviewed 8,000 medical records and found 332 cases of lupus. Based on census data for the region, they determined that African-American women developed lupus earlier than white women, with the rate increasing more dramatically at puberty and peaking between ages 30 and 39. Rates among white women, however, increased more gradually and peaked between ages 60 and 69.

Key point: Although lupus is often considered a disease that affects young women, hormones may have a greater affect on its development in black women than white women.

Status and Missing Days At Work in a Large Population of Patients with Systemic Lupus Erythematosus (SLE)

Researchers from Toronto Western Hospital in Canada used a large lupus registry to evaluate how the disease affected patients’ ability to work. Of the 1,242 individuals evaluated, with an average age of 40.5, about half were not working, although 80% had previously worked. Among those working, 30% had missed work since their last doctor visit, and half said that their illness make it difficult for them to do their job. Researchers found that the longer patients had the disease, the greater their disease activity, and the more “troublesome symptoms” they had, such as fatigue, weakness, and difficulty thinking, the more likely they were to miss work.xiv

Key point: The researchers note that improving work-related interventions could reduce disability among individuals who want to work, but whose lupus interferes in their ability to work.


More information about lupus and treatment advances can be found by visiting www.lupusresearch.org.

The Alliance for Lupus Research Special Report on the 2011 American College of Rheumatology Meeting was made possible in part by generous support from Genentech.

©2011 Alliance for Lupus Research. All Rights Reserved.

Contents herein may not be reproduced, republished or distributed without the prior written permission of the Alliance for Lupus Research. To request permission to reproduce, republish or distribute any part of this report, contact us at 212-218-2840 or email info@lupusresearch.org.



1.5 million

people in the U.S. have Lupus.

90 million

dollars committed to lupus research by the Alliance for Lupus Research.


We're walking across the United States to raise awareness and funds for lupus research.

Can't make it? Join our National Virtual Walk to participate anytime, anywhere.


Show your support by visiting the Alliance for Lupus Research online store. Discover the perfect gift, or prepare for a walk with our selection of apparel and accessories.

Powered by Convio
nonprofit software