Scleroderma Registry

National Registry for Childhood Onset Scleroderma

Protocol Description

This project entails development of a database, also called a research registry, for people with childhood onset scleroderma, both systemic and localized forms. The study will also examine blood samples for serological markers of disease. The database will help in the identification of prospective research participants for future studies, however participation in the research registry alone does not involve therapeutic treatment.

Eligibility Criteria

Subject to certain exclusion criteria, this study is open to individuals of both genders under the age of 30 who have been diagnosed with either a systemic or localized scleroderma and who were under the age of 16 when their first symptoms attributable to scleroderma were identified.
Males: Under age 30
Females: Under age 30


Enrollment in the registry will require participants to complete quality of life forms and agree to data collection from their past/present medical records on an ongoing basis. Information collected will include: data on the participant's general medical condition; scleroderma-related information from a physical examination; medications prescribed; results of scleroderma-related laboratory and medical tests; and, demographic data (i.e., birth date, ethnic background). A blood sample from each registry participant will be requested, and can be collected when blood is drawn during routine clinical visits.
Visits: One initial visit, followed by annual updates
Duration: Indefinite

Status: Open for Enrollment

Primary Investigator

Kathryn Torok, MD

Contact Information

For information or to enroll, please contact:
Christina Kelsey, MSEd