July 6, 2004

Emory, Georgia creating state lupus registry


By Alicia Sands Lurry

For the first time in Georgia, a registry is being created for systemic lupus erythematosus (lupus) patients in Fulton, DeKalb and Richmond counties.

The Georgia Lupus Registry is a population-based disease registry that aims to record the prevalence and incidence of lupus within the three counties in order to determine how severe a health problem lupus is. It also will give doctors and researchers a way of tracking new lupus cases.

CDC is sponsoring the project, which is being led by the School of Medicine's rheumatology division in partnership with the Georgia Department of Human Resources (DHR).

"We really don't have a good handle on how many people have lupus," said Sam Lim, assistant professor of medicine 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, 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 DHR, the registry will identify as many practitioners and hospitals providing care to potential lupus cases 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 Georgia's chapter of the Lupus Foundation of America, also will help identify patients and their providers.

Once these providers and hospitals are identified, trained data abstractors will review medical records and document the presence of the criteria needed to enter a patient into the registry; the abstractors will record other information important to public health surveillance, as well.

The registry will spawn other important projects, such as the Georgia Lupus Cohort, involving those participants who provide written, informed consent. Patients agreeing to be included in the cohort will be sent information related to quality of life, health care utilization and treatment options, disease progression, and other important lupus issues. They also will be asked whether they would like to participate in future research opportunities.

"It's a huge undertaking, but it's going to be very rewarding," Lim said. "Participants may not benefit directly from the lupus registry, but doctors, researchers and scientists may learn new things that will help others. Improving the epidemiological understanding and surveillance of lupus will ultimately enable a deeper scientific understanding of the disease and its impact on the population. We will get a better sense of who gets the disease and will be able to formulate more informed research questions."

For more information about the Georgia Lupus Registry, call 404-616-0433.