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 380 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 is research team are 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 measure1.
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 2. In another study of 115 cutaneous lupus patients followed over a shorter-term period of six months, current smokers experienced significantly lower improvement in their disease activity compared to past or never smokers3. This data can be used by providers to inform patients about their disease prognosis.
In addition, Dr. Chong’s group has been seeking to understand abnormalities in molecular pathways that lead to the development of cutaneous lupus. With new emerging technologies such as RNA sequencing and spatial transcriptomics, Dr. Chong’s group is seeking to elucidate the molecular heterogeneity of cutaneous lupus. In a recent study of 62 patients with cutaneous lupus, six unique patient groups based on race/ethnicity and cutaneous lupus subtype showed diverse molecular profiles pertaining to multiple different immune cell such as T cells and neutrophils, and cell function signatures4. Future studies to better understand this molecular diversity in CLE can aid in the development of more targeted treatments for these different subsets of patients with CLE.
Works Cited
1. Ogunsanya ME, Cho SK, Hudson A, Chong BF. Validation and reliability of a disease-specific quality-of-life measure in patients with cutaneous lupus erythematosus. Br J Dermatol. 2019;180(6):1430-7.
2. Ker KJ, Teske NM, Feng R, Chong BF, Werth VP. Natural history of disease activity and damage in patients with cutaneous lupus erythematosus. J Am Acad Dermatol. 2018;79(6):1053-60 e3.
3. Cepica TB, Xie L, Faden DF, Stone CJ, Feng R, Werth VP, et al. Smoking status is a negative predictor of six-month cutaneous lupus activity trends: A prospective cohort study. J Am Acad Dermatol. 2025;92(4):912-4.
4. Zhu JL, Tran LT, Smith M, Zheng F, Cai L, James JA, et al. Modular gene analysis reveals distinct molecular signatures for subsets of patients with cutaneous lupus erythematosus. Br J Dermatol. 2021;185(3):563-72.