The purpose of this survey is to help us identify patients with lupus who are eligible and would like to be counted in the Georgia Lupus Registry (GLR) or participate in a lupus follow-up program (GOALS).
The Georgia Lupus Registry (GLR) is a CDC-funded project that aims to determine how widespread lupus and other related diseases are in our community. This initial effort will only involve patients with lupus who lived in Fulton, DeKalb, or Richmond counties in the years 2002-2004. The project is headed by the Georgia Department of Human Resources, Division of Public Health, and is being conducted by Emory University.
Why is a lupus registry important?
Lupus is an autoimmune disease that can significantly impact the public health. The GLR will help determine the extent to which this disease impacts our public health and help us better understand those individuals who get lupus. This project strives to include all cases of lupus, mild or severe, which is why your participation is so important.
How do I participate in the GLR?
We will work with hospitals and physicians to identify lupus patients. However, you can help us by identifying yourself as someone we want to count in the Registry. You qualify for the GLR if you are in one of the following categories: • physician-diagnosed lupus in 2002 while living in DeKalb, Fulton or Richmond County. • newly diagnosed with lupus by a physician in 2003 while living in DeKalb, Fulton or Richmond County. • newly diagnosed with lupus by a physician in 2004 while living in DeKalb, Fulton or Richmond County.
For those lupus patients who may not be eligible for the Registry, a lupus follow-up program (GOALS) is open to everyone with lupus in Georgia.
Confidentiality is of the utmost importance to the Registry. The information you provide in this survey is transmitted by a secure method and will only be viewed by authorized staff. We have pledged to protect the confidentiality of identified lupus patients and the hospitals and physicians providing information. All staff members are bound by written Confidentiality Agreements. Collected information is stored on a secure server in a locked area. Information about an individual participant will never be released without his/her written approval.