SOUL | Skin Outcomes Uncovered in Lupus Study
What is SOUL?
The Skin Outcomes Uncovered in Lupus Study is one of the largest studies on skin lupus in the country, conducted to better understand how lupus impacts the quality of life of those affected by the disease. SOUL is part of Georgians Organized Against Lupus (GOAL), a project led by the Division of Rheumatology at Emory University. We will collect vital information to better understand important outcomes among people with skin lupus like you. SOUL will address how skin lupus may impact physical, emotional and social aspects of your health. By learning from patients with skin lupus, we can help to bridge the gaps that still remain in our understanding of these forms of lupus. Why do we need you? We will have the opportunity to examine how important social determinants of health interact with clinical and/or biologic factors to influence the quality of life and other important outcomes of people with skin lupus. Our findings can be used to make treatments and services more tailored, accessible, and affordable to the needs of people with skin lupus. What are the gaps and opportunities for improvement? A majority of patients with SLE have skin rashes at some time during the course of the disease. Many other lupus patients just present skin lesions without systemic features. GOAL has collected important data on over 900 Georgians with systemic lupus erythematosus (SLE), helping us to better understand patients’ needs and opportunities for better care. As oppose to SLE, research on skin lupus has been sparse with little known about the burden of the disease on patients. Data collected from SOUL participants will contribute to fill in the gaps of knowledge about the quality of life and opportunities for improvement among people with skin lupus. How you can help? We need as many people affected by skin lupus to participate, ensuring a fair representation of the reality of those with this disease.
Contact us to get more information about the SOUL Study. 404-251-8907 // info@lupusingeorgia.org |