The study is funded by and under direction of the Centers for Disease Control and Prevention 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 going to dialysis instead of working and caring for their families.”
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 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.
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 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.
“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. Healthcare 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.”
“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, Centers for Disease Control and Prevention.
“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.
Georgians Organized Against Lupus (GOAL)
The registry spawned other important projects, such as GOAL, involving those participants who provided written, informed consent. More than 900 patients agreed to be included in GOAL, making it one of the largest in the country. These patients agree to receive at least yearly surveys that include information related to quality of life, health care utilization and treatment options, disease progression, and other important lupus issues to better understand the impact of lupus on patients’ lives.
Patients were also asked whether they would like to participate in future research opportunities, such as clinical trials, through the Division of Rheumatology and Lowance Center for Human Immunology at Emory. In collaboration with Ignacio Sanz, MD, Director of the Lowance Center, Emory University is studying how key immune cells react in lupus, which may lead to a better understanding and predictability of the disease.
Lowance Center for Human Immunology
The overall goal of the Lowance Center for Human Immunology is to understand the immunological mechanisms responsible for human autoimmune and allergic diseases with special emphasis on Systemic Lupus Erythematosus (SLE). This goal will be accomplished through the integrated effort or basic, clinical and translational scientists applying state-of-the-art technology as well as advanced epidemiology and outcomes research tools. Specific immunological defects will be identified and used to develop biomarkers of disease heterogeneity in order to better segment SLE into discreet disease subsets. In turn, disease segmentation by molecular mechanisms will be used to select treatments targeted to the molecular pathways that are defective in each disease subset. This approach will result in better and safer treatments for the individual patient (Precision Medicine) instead of treating the disease as a homogenous entity. Moreover, the knowledge derived from our studies will provide better biomarkers of disease progression and response to treatment.
The lupus research program at Emory University is one of only a few in the world that can integrate findings from both the population and molecular/genetic levels. It is uniquely situated to advance our knowledge of lupus for the betterment of all those who suffer with the condition. Together with the Georgia Chapter of the LFA, the state is situated to be the center of advocacy, education, and research activities in lupus for years to come.
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. The Foundation’s national research program employs a unique multidisciplinary approach to address the most pressing scientific challenges, including the need to expand epidemiology data on lupus. Through its advocacy efforts, the Foundation stimulated the largest and most comprehensive lupus study to better measure the burden of lupus and generate additional private investment to develop new treatments and improve the quality of life for people affected by lupus.