There are substantial racial disparities in the burden of lupus, according to initial data from the largest and most far-reaching epidemiology study ever conducted on the disease lupus and published recently in the journal Arthritis and Rheumatism. New data from two registries, part of the National Lupus Patient Registry (NLPR), also reveal that black females disproportionately are burdened by lupus, a devastating and complicated autoimmune disease. 

Lupus

An extensive review of records from hospitals, specialists’ offices, and clinical laboratories in Georgia and Michigan showed blacks had an increased proportion of lupus-related renal (kidney) disease and progression to end-stage renal disease than whites, and that black females developed lupus at a younger age than white females. To learn more, visit www.lupus.org/news.

The NLPR is the first comprehensive population-based epidemiology study in lupus, with five registry sites located in Georgia, Michigan, California, New York, and the Indian Health Service. The sites are collaborating to use similar case definitions and data collection procedures to capture diagnosed lupus in these areas and allow more accurate data comparison, critical in assessing this complicated disease. The Georgia and Michigan sites are the first to report their findings.

With a grant and under direction of the Centers for Disease Control and Prevention (CDC) and in partnership with the Georgia and Michigan state health departments, investigators from Emory University and the University of Michigan led this landmark epidemiology study to include blacks and whites of all ages.

“Black women had very high rates of lupus, with an incidence rate in Georgia nearly three times higher than that for white women, with significantly high rates in the 30-39 age group,” said Georgia principal investigator, S. Sam Lim, MD, MPH, Emory University, Department of Medicine, Division of Rheumatology. “These are young women in the prime of their careers, family, and fertility. This means a severely compromised future, with a disease that waxes and wanes, affecting every aspect of daily living for the rest of their lives.”

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“We found a striking difference in patterns of lupus between the black and white populations, which may help us better assess risk for developing this disease,” explained Michigan principal investigator, Emily C. Somers, PhD, ScM, University of Michigan, Departments of Internal Medicine, Environmental Health Sciences, and Obstetrics & Gynecology. “Not only was the peak risk of lupus earlier among black females, but a higher proportion also developed severe or life-threatening complications of lupus, such as neurologic or kidney disease, including end-stage renal disease. Health care providers caring for this population should be aware of the importance of screening for early signs of lupus, in particular kidney disease.”

“The results just from these two registries illuminate the enormous burden of lupus among young women in the prime of their life,” said Sandra C. Raymond, President & CEO, the Lupus Foundation of America. “But data from these sites represent only the tip of the iceberg. Lupus is a complex and diverse disease that can take many forms. We need a more complete understanding of the impact of all forms of lupus among all populations at risk for developing the disease. The data from the next three sites will help to fill in gaps and document the urgent need to elevate lupus to a national health priority.”

The Georgia and Michigan investigators noted the challenges with diagnosing lupus, stating that likely there remain undiagnosed cases in the community and that applying more up-to-date diagnostic criteria might result in even higher incidence and prevalence rates. The investigators also said they plan to use the lupus patient registries to recruit cohorts for ongoing studies to document the progression of the disease and determine the economic burden of lupus over time, which, according to data already available, is substantial.

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“The purpose of the National Lupus Patient Registry is to develop more complete population-based incidence and prevalence estimates and to assess the impact of lupus,” said Charles Helmick, MD, medical epidemiologist, CDC.

“The results of previous lupus epidemiology studies have varied widely for a number of reasons, including lack of representation of populations at high risk, different case definitions, and limited or small source populations. The Georgia and Michigan studies include four counties with a combined population of nearly four million people. The large surveillance population, along with the extensive review of records from many sources, has resulted in the most reliable and up-to-date statistics for lupus,” said Helmick.

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