Roughly 2 in 1000 people in the United States have morphea, a skin disorder that causes hardening of the skin and possibly deeper tissues such as muscle and fascia. There are many different variations of morphea, including linear, deep, plaque, guttate, generalized, lichen sclerosus/morphea overlap and mixed subtypes. Many of the affected persons are children who often have the more severe forms of the disease with disfigurement and neurologic complications.  The cause of the disease is not known and there is no cure at this time. However, researchers feel that genetic factors may play a major role in this disease.

Dermatologists at UT Southwestern are establishing a national registry for morphea patients and their relatives in order to gather the large number of patients necessary for genetic studies. Another aim to the registry is to elucidate the association of morphea with other diseases in the hopes that this will further research in the area of morphea.  This registry is a significant advancement in morphea research as it is the only morphea DNA repository for both adults and children in the United States.  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 morphea patients.

The principal investigator for the study is Heidi Jacobe, MD, assistant professor of dermatology at UT Southwestern and director of the UT Southwestern phototherapy unit, an expert in the treatment of morphea.  This phototherapy unit features UVA-1 which has been shown to be a promising treatment for morphea.  Participants will receive newsletters detailing the progress of the registry bi-annually. Registration of study participants is already underway and participants need not visit UT Southwestern to enroll.  This site has information about morphea, and everything you need to become a part of the study.

You can also obtain additional information at the Scleroderma Foundation website: http://www.scleroderma.org/

This registry is sponsored in part by the Dermatology Foundation: http://dermatologyfoundation.org/