Morphea in Adults and Children (MAC) Cohort Study: A Morphea Registry and DNA Repository

Study Overview
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Brief Summary
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The Morphea in Adults and Children (MAC) cohort is the first registry for both children and adults with morphea (also known as localized scleroderma) in the country. The purpose of the registry is to learn more about morphea, specifically: How morphea behaves over time How frequently specific problems occur along with morphea (for example, arthritis) Whether morphea has an autoimmune background

Official Title
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Immunologic and Genetic Profiles in Subsets of Morphea Patients

Conditions
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Scleroderma, Localized, Morphea, Frontal Linear Scleroderma en Coup de Sabre, Scleroderma, Circumscribed, Scleroderma, Linear

Intervention / Treatment
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* Other: Morphea


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patient must have a clinical diagnosis of morphea confirmed by the primary investigator and by histopathological examination. Ages 0-90 years old Children must weigh more than 20 lbs. in order to satisfy Children's Medical Center policy for the maximum amount of blood drawn in a 24 hour period. Patient or legal guardian must be able to speak and read at a 6th grade reading level. Both male and female patients will be eligible All races and ethnic backgrounds will be included Relationships to proband: All patients with morphea will be included. A patient's family history will be reviewed and if there is a family history of morphea or systemic sclerosis then we will give the study patient the investigator's contact information and ask the family member to call the study team to answer any questions and enroll them in the study if they choose to do so. Ability to give informed consent: Patients must be able to give informed consent or they will give assent with parent or guardian consent as a minor to be a part of the morphea registry. Exclusion Criteria: - Patients who have been coded as morphea (701.0), but do not have morphea/localized scleroderma (examples: steroid atrophy, acquired keratoderma, keloids, nephrogenic fibrosing dermopathy, systemic sclerosis, lichen sclerosis)

Ages Eligible for Study
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Maximum Age: 90 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Morphea<br>Those having the condition morphea or other synonymous diagnosis (such as localized scleroderma, linear scleroderma, Parry-Romberg syndrome, en coup de sabre) | Other: Morphea<br> <br> * Other names: Frontal Linear Scleroderma en Coup de Sabre;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Activity/damage measurement in morphea as scored on the Localized Scleroderma Cutaneous Assessment Tool (LoSCAT) |  | 5 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life scores measured by the Dermatology Life Quality Index (DLQI) |  | 5 years |