Frequently Asked Questions
About the Registry
What is the purpose of the registry?
The registry was established in 2007 to learn more about morphea. Little is known about morphea since it is a rare, poorly understood, and understudied condition. This registry will provide a resource for investigators to make discoveries in regard to both the clinical and genetic aspects of the disease.
Who is eligible to join?
If you or your child have morphea and are at least 3 years old, you can join the study. If the diagnosis is uncertain, we would still like to see you to perform our own assessment. If you are uncertain about joining or eligibility, feel free to contact us for more information. Note: children under the age of 18 must be accompanied by a parent or guardian if the child comes to UT Southwestern for enrollment.
How many people have joined the registry?
There are currently more than 400 participants, but we need as many participants as possible to reach our goal.
How do I enroll?
We are currently only able to enroll patients in person. Please contact us by email or phone to set up an appointment.
Will the registry provide new treatments?
No, but we are conducting a separate double-blinded randomized clinical trial studying the effectiveness of UVA-1 phototherapy for morphea. Please visit our UVA-1 clinical trial page for more information about the study and eligibility requirements.
What does it cost to enroll?
There is no cost to enroll. However, we are unable to provide treatments, visits associated with treatment, or studies related to treatment free of charge. Your insurance carrier will be billed for the care of your condition. Please check our clinical trials site for ongoing information about studies offering treatments free of charge.
What is morphea?
Morphea, also known as localized scleroderma, is a condition which causes hardening and discoloration of the skin. It is thought to be isolated to the skin without internal organ involvement as seen in systemic sclerosis (commonly known as scleroderma).
Morphea is an autoimmune disorder (such as type I diabetes, lupus, vitiligo, or multiple sclerosis, among others). While morphea does not affect lifespan, it can significantly affect a patient’s appearance or have symptoms including itching and pain. Often patients are not diagnosed in the early stages as it can initially look like a bruise.
What causes morphea?
The cause of morphea is unknown, but it is thought that the collagen-producing cells become overactive and overproduce collagen. This can result in areas of sclerosis or skin hardening. Researchers are trying to determine what triggers the disease and whether it is genetic in origin.
Who gets morphea?
Morphea is more common in women than in men and about half of all patients first show signs before the age of 18. There is very little information about who are at highest risk for getting morphea as there are no known predictors for the disease. Data from our registry indicates that other autoimmune diseases are more common in patients with morphea and possibly their relatives as well.
What are the different types of morphea?
Morphea has various manifestations with several recognized subtypes. The most common are:
- Circumscribed (plaque): Oval/round, solitary indurated areas that do not coalesce; variant affecting the deeper tissue is referred to as morphea profunda.
- Generalized: Four or more coalescing plaques (lesions) larger than 3 centimeters on two or more anatomic regions; variant with deep lesions affecting the majority of the body surface area
- Linear: Band-like thickening or coalescing plaques that form a linear pattern, may involve deeper tissues; facial varieties include En Coup de Sabre and progressive hemi-facial atrophy (Parry Romberg Syndrome)
- Mixed: Presence of lesions consistent with the definition of linear morphea plus either plaque or generalized lesions concomitantly (new classification)
What are the treatments for morphea?
Your doctor will help determine what treatment is best for your particular situation. Some examples of therapies used for morphea are:
- Steroids: These act as agents to decrease inflammation and collagen-producing cell function. When applied either as a cream/ointment or injected into the lesion, it only treats the areas it is applied to and new lesions may develop elsewhere. Oral or intravenous steroids are usually reserved for more extensive and severe disease.
- Tacrolimus or Pimecrolmius cream: These are applied to the skin and act in a similar manner as steroids (anti-inflammation and inhibition of fibroblasts).
- Calcipotriene cream: This is a form of Vitamin D that is applied to the skin with the same goal of suppressing inflammation and decreasing fibroblast function.
- Methotrexate: Used more often in children and generally reserved for more extensive and severe disease (joint limitation, neurologic complications, potential for disfigurement). Requires regular blood tests.
- UVA-1 Phototherapy: This specialized form of phototherapy is thought to have anti-inflammatory effects in addition to helping break down collagen. UVA-1 is limited by the availability of light units outside of large academic research centers. Read more about our ongoing UVA-1 phototherapy clinical trial.
- PUVA, UVB Phototherapy: These forms of phototherapy have also been utilized with evidence for some success. It is more widely available, but do not show as much promise as that of UVA-1.
- Physical Therapy, Occupational Therapy: Aimed at decreasing the degree of immobility or range of motion loss that may be associated with deeper tissue involvement in morphea.
Still have a question? Contact us with your questions.
Join the Study
Contact us by email or phone to set up an appointment.