Cutaneous Lupus Registry

Study ID

Cancer Related

Healthy Volunteers

Study Sites

  • Clements University Hospital
  • UT Southwestern-Clinical Translational Research Center (CTRC)
  • UT Southwestern Ambulatory Services
  • Zale Lipshy University Hospital
  • Parkland Health & Hospital System

Elaine Kunzler

Principal Investigator
Benjamin Chong, M.D.

Official Title

Molecular Studies on Cutaneous Lupus

Brief Overview

Approximately 1.4 million individuals in the United States have systemic lupus
erythematosus, and about 85% 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.

The cause of cutaneous lupus is not completely understood, but likely includes multiple
factors from our genes 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. This study aims to accumulate even larger numbers of patients to
confidently identify genes and the proteins they encode that could contribute greatly to the
formation of cutaneous lupus. The discovery of these genes and proteins would help not only
uncover how cutaneous lupus forms, but also improve our abilities to diagnose this disease
and predict its course, and stimulate new drug development.


The purpose of this study is to create a national registry of patients with cutaneous lupus
patients in order to address many unknown questions about this disease. Specifically, we are
interested in better understanding the causes of cutaneous lupus and improving our methods
of diagnosis, prognosis, and management of this disease. We plan to use information from all
patient sources, including medical histories, clinical information, laboratory data, and
blood and skin samples in order to answer these questions.

Each study patient will be asked to complete a series of questionnaires, which, for example,
will ask about cutaneous and/or systemic lupus history, past medical history, family
history, quality of life, and sun protective habits. Patients will be also asked to donate
blood and skin samples and undergo digital photography of affected areas. No treatments will
be administered as part of this study, but all participants will be notified of clinical
trials being conducted at UT Southwestern. This study is for the purpose of data collection
only. Patients will be asked to be followed on an annual basis for five years.

Participant Eligibility

Inclusion Criteria:

- Diagnosed with cutaneous lupus erythematosus and/or systemic lupus erythematosus by
clinical, laboratory, and histopathological findings

- Ability to speak and read English or Spanish at a 6th grade reading level (a
translator will be available with additional consent forms in Spanish)

- Ability to give written informed consent

Exclusion Criteria:

- Less than 18 years of age, since the characteristics of the disease in these subjects
could be very different

- Due to a medication, in which its discontinuation results in the resolution of
cutaneous lupus, since the characteristics of the disease in these subjects could be
very different

- Medical conditions who do not warrant a skin biopsy

- Unable to give written, informed consent or undergo a skin biopsy and/or venipuncture
for any other reason