GEORGIA LUPUS REGISTRY
The Centers for Disease Control and Prevention (CDC) is sponsoring two population-based lupus registries to help better define the impact of lupus on the public health. In particular, the CDC will strive to count the numbers of lupus patients in defined geographic areas to establish prevalence and incidence figures. One registry will be in Georgia and the other in Michigan. Each registry represents a different geographic area and contains large of number of people at high risk for lupus. The Georgia effort is being led by the Division of Rheumatology at Emory University in partnership with the Georgia Department of Human Resources (DHR). S. Sam Lim, MD, Assistant Professor of Medicine at Emory, is the Principal Investigator. Georgia is working closely with its Michigan and CDC partners to establish common protocols.
The Georgia effort will have two components. The first component will establish the Georgia Lupus Registry. This Registry will serve to count the numbers of people with lupus in Dekalb, Fulton and Richmond counties to establish prevalence (number of confirmed lupus patients as of 2002) and incidence (number of new cases for years 2003 and 2004).
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 hospitals and practitioners as possible who are providing care to potential cases of lupus. Providers contacted will include rheumatologists, nephrologists, dermatologists, obstetricians, cardiologists, neurologists and hematologists, as well as internists and primary care physicians. Patient advocacy groups such as the Georgia Chapter of the Lupus Foundation of America will also help identify patients and their healthcare 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 lupus registry. Other information important to public health surveillance will be collected as well.
The registry will spawn other important projects such as The Georgia Lupus Cohort. The Cohort will contain only registry participants who provide written, informed consent. Physicians, hospitals, and patient support groups participating in the registry will be provided informational packets about the Cohort. Postcards will be provided for patients with lupus to mail back to registry headquarters indicating their willingness to be contacted. Once consent is obtained, participants will agree to be contacted regarding information related to quality of life, health care utilization and treatment options, disease progression, and other important lupus issues. Participants may also agree to be contacted about future research opportunities.
“While participants may not benefit directly from the Lupus Registry, doctors, researchers and scientists may learn new things that will help others,” Dr. Lim says. “Improving on 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 based on these efforts.”
What can I do to help?
You can help by telling your physician about the Registry and encouraging his/her participation when we make contact. Since physicians and hospitals are not required to participate, the success of this project depends on their willingness to allow us to enter their practices and count the number of lupus patients.
You can also take a survey that will determine whether you may be eligible for the Registry and, if so, self-refer to enroll. The survey links are available from this website and may be taken in English or Spanish.
For more information about the Georgia Lupus Registry, please call (404) 616-0433.
Link to Registry surveys:
Click here to take the survey in English
Click here to take the survey in Spanish