There are substantial racial disparities in the burden of lupus, according to initial data from the largest and most far-reaching study ever conducted on the disease and published online today by the journal, Arthritis and Rheumatism. The data confirms that black females disproportionately are burdened by lupus, a devastating and complicated autoimmune disease.
"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," says principal investigator, S. Sam Lim, MD, MPH, associate professor in the Division of Rheumatology at Emory University School of Medicine. "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."
The study is funded by and under direction of the Centers for Disease Control and Prevention (CDC) in partnership with the Georgia and Michigan state health departments. Investigators from Emory University and the University of Michigan collaborated on the study to include blacks and whites of all ages in two comparable urban areas, Atlanta and Detroit. The study in Atlanta focused on Fulton and DeKalb Counties.
"These data directly reflect the burden of lupus in our community," says Lim. "The high burden of lupus in African-American women is of particular relevance given Atlanta's demographics. Also, the high rate of kidney failure, again mostly in African Americans, continues to be unacceptably high. These are mostly young, minority women who are on dialysis instead of working and caring for their families."
Lupus is an unpredictable and often misunderstood chronic autoimmune disease that can ravage different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus 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 or kidney failure.
The National Lupus Patient Registry (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 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.
"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," says Charles Helmick, MD, CDC medical epidemiologist.
"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," says Helmick. "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.".
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 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.
Lim and colleagues at Emory University have already assembled more than 900 patients identified through this registry. The group is called Georgians Organized Against Lupus (GOAL). Patients agree to receive at least yearly surveys that seek to better understand the impact of lupus on patients’ lives. Lim’s research also extends into two large lupus clinics that he heads at Grady Hospital and The Emory Clinic. All of these patients are potentially engaged in the exciting immunology research through the Division of Rheumatology and Lowance Center for Human Immunology at Emory. In collaboration with Ignacio Sanz, MD and his research group, Emory University is studying how key immune cells react in lupus , which may lead to a better understanding and predictability of the disease.
"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," explains 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 National Lupus Patient Registry provides a tremendous resource," says Lim, "from which we can build the next line of research projects to determine the additional ‘whys’ of the disproportionate rates in minorities and poorer outcomes as well as other important questions involving the role of the immune system and genetics that we're continuing to pursue at Emory and at the University of Michigan. We, in Georgia, and particularly at Emory are now sitting in many ways in the middle of one of the lupus capitals of the country and world as it relates to patient communities and groundbreaking research at both the population and immunologic levels."
For more information on lupus, log on to lupus.org/georgia.