Cutaneous Lupus Registry

Approximately 1.4 million individuals in the United States have systemic lupus erythematosus, and about 85 percent of these individuals develop skin lesions at some point of their disease. Cutaneous lupus erythematosus represents the skin manifestations of systemic lupus erythematosus, and can appear in people with or without systemic lupus. It is a mentally, physically, and emotionally debilitating disease that affects both the quality of life and social well-being of those affected.

Cutaneous lupus erythematosus can be classified as one of three subtypes: acute, subacute, or chronic cutaneous lupus. Of these subtypes, the chronic cutaneous lupus subtype is the largest because discoid lupus, which falls in this category, is the most common type of cutaneous lupus seen in our dermatology clinics.

The cause of cutaneous lupus is not completely understood, but likely includes multiple factors from our genes, our immune system, and the environment. Multiple genetic studies with small numbers of cutaneous lupus patients have been performed to determine which genes are associated with cutaneous lupus. Our national cutaneous lupus registry aims to accumulate even larger numbers of patients to confidently identify genes that could contribute greatly to the formation of cutaneous lupus. The discovery of these genes would help in assessing the risk of disease development in relatives of cutaneous lupus patients, and stimulate new drug development.

Furthermore, lupus patients also generate autoantibodies that react to normal proteins in the body and stimulate the immune system to mount a response against the body. These autoantibodies have yet to be completely identified in cutaneous lupus patients. Thus, our registry hopes to collect enough patients to discover important autoantibodies that would aid in the diagnosis and prognosis and generate new treatments for cutaneous lupus. In our environment, ultraviolet light is thought to be a major precipitator of cutaneous lupus, since photosensitivity is a classic symptom of patients with cutaneous lupus. However, it is possible that other triggers in the environment, such as infectious organisms, may play a role. Our registry aims to collect more information about potential new causes of the disease from our enrolled subjects.

Dermatologists at UT Southwestern Medical Center are establishing a national registry for cutaneous lupus patients and their relatives in order to gather the large number of patients necessary for studies to better understand the development of the disease and improve our methods of diagnosis, prognosis, and treatment. This registry is a significant advancement in cutaneous lupus research. This registry will provide a resource for investigators to make discoveries in regards to both the clinical and genetic aspects of the disease. Patients enrolled in the study will be first in line for clinical trials conducted at UT Southwestern for cutaneous lupus patients.

The principal investigator for the study is Benjamin Chong, M.D., Assistant Professor of Dermatology at UT Southwestern, Director of the Connective Tissue Diseases Clinic, and an expert in the treatment of cutaneous lupus. Participants will receive newsletters detailing the progress of the registry annually. Registration of study participants is already underway.