For the first time in Georgia, a registry is being created to determine more precisely the number of systemic lupus erythematosus (lupus) patients in Fulton, DeKalb and Richmond counties. The Georgia Lupus Registry is a population-based disease registry that will begin by trying to determine the prevalence and incidence of lupus within all three counties. The registry seeks to determine the prevalence of individuals with lupus, as well as provide an idea of how severe a problem the disease may be. It will also give doctors and researchers a way of tracking new lupus cases.
The Georgia Lupus Registry is being led by the Division of Rheumatology of the Emory University School of Medicine in partnership with the Georgia Department of Human Resources. The project is sponsored by the Centers for Disease Control and Prevention.
"The problem is that we really don't have a good handle on how many people have lupus," says S. Sam Lim, MD, assistant professor of medicine in the Division of Rheumatology at Emory, and principal investigator of the registry. "Lupus poses unique challenges of diagnosis. Cancer cases, for example, are easier to count because you have tissue samples to examine. However, with lupus, there is no single test to determine if a patient has lupus or not. There are criteria based on a patient's symptoms and lab findings that can include skin and kidney biopsy as well as blood tests. But the diagnosis depends on a constellation of factors rather than one single reading or test result."
Lupus is an autoimmune disease whose cause is unknown. The condition exhibits a vast array of clinical manifestations that include skin rashes, sensitivity to sunlight, heart and kidney damage, arthritis, neurologic problems, and blood disorders. Some lupus patients have relatively mild disease that may include mostly joint and skin complaints. Others can have very severe disease that may involve the heart, lung or kidneys. Lupus disproportionately affects women in their childbearing years, African-Americans and Hispanics.
The Georgia Lupus Registry program will not require patient consent. Acting as public health agents under the auspices of the Georgia Department of Human Resources, the registry will identify as many practitioners and hospitals providing care to potential cases of lupus as possible. Providers contacted will include rheumatologists, nephrologists, dermatologists, obstetricians, and cardiologists, as well as internists and primary care physicians. Patient advocacy groups such as the Lupus Foundation of America-Georgia chapter will also help identify patients and their providers.
Once these providers and hospitals are identified, lupus cases will be validated through medical record review. Trained data abstractors will review medical records and document the presence of the criteria needed to enter a patient into the registry. Other information important to public health surveillance will be collected as well.
"It's a huge undertaking, but it's going to be very rewarding," says Dr. Lim. "We will be able to use these numbers to estimate how many people in Fulton, DeKalb and Richmond counties have this disease."
For more information about the Georgia Lupus Registry, please call (404) 616-0433.