University of Texas Southwestern Cutaneous Lupus Registry: Seeking to improve the care of patients with cutaneous lupus

Benjamin Chong, MD, MSCS conducts clinical and translational research in cutaneous lupus erythematosus, an autoimmune and photosensitive skin condition in patients with systemic lupus erythematosus. He is the principal investigator of the University of Texas Southwestern Cutaneous Lupus Registry which contains clinical and historical data, and blood and skin samples from more than 350 patients. The registry serves as a foundation for multiple clinical and translational research studies in cutaneous lupus, which include developing outcome measures for clinical trials in cutaneous lupus, characterizing the disease course and quality of life of patients with cutaneous lupus, and elucidating the immunologic differences in cutaneous lupus and systemic lupus patients.

 Dr. Chong and his research team are working on a NIH-funded R01 project seeking to establish outcome measures for therapeutic efficacy for cutaneous lupus erythematosus clinical trials. Currently, there is no agreement on the amount of skin improvement in patients with cutaneous lupus that a drug needs to demonstrate. In addition, because patient perspectives on drug treatments are important, they have designed and validated a quality of life questionnaire specific to cutaneous lupus called CLEQoL for future clinical trials to use as a patient-reported outcome measure.

The University of Texas Southwestern Cutaneous Lupus Registry has collected longitudinal data from patients to study their disease courses and quality of life over time. Dr. Chong’s group, along with Dr. Victoria Werth’s group at University of Pennsylvania, investigated skin disease courses of 83 patients with cutaneous lupus followed for at least two years. High baseline skin disease activity, minority race, and shorter disease duration were clinical factors associated with disease activity improvement. This data can be used by providers to inform patients about their disease prognosis. Dr. Chong’s group previously showed an increase in co-existing autoimmune conditions, including autoimmune thyroid disease, in patients with cutaneous lupus.

Comparing immunologic differences between cutaneous lupus and systemic lupus would contribute greatly to the understanding of progression to skin-limited to systemic disease and yield new ideas on treatment for lupus. Dr. Chong’s group identified autoantibody differences in different subsets of cutaneous lupus and systemic lupus patients, suggesting that autoantibodies against nuclear antigens are biomarker candidates that may inform cutaneous lupus patients of their likelihood of progression to systemic lupus. They are studying myeloid-derived suppressor cells, which are involved in dampening immune responses and may be important in altering systemic disease progression in patients with cutaneous lupus. In addition, with new emerging technologies such as RNA sequencing, Dr. Chong’s group is seeking to elucidate the molecular heterogeneity of cutaneous lupus would also help lead to personalized treatments for these patients.