Research Study Seeking Patient Volunteers
This information does not represent SPD endorsement of any posted study. The SPD has no jurisdiction over or involvement directly with these studies. All studies listed have been approved by the Institutional Review Board.
If you are presently under the care of a physician for a skin condition, you should not disrupt your current treatment program before discussing it with your doctor(s).
NATIONAL REGISTRY FOR CHILDHOOD ONSET SCLERODERMA (NRCOS)
Updated September 22, 2006
Description of Study:
The purpose of this study is to develop a national registry of patients with scleroderma that began during childhood, and to study blood autoantibodies commonly found in these diseases.
- Systemic Sclerosis: limited cutaneous or diffuse cutaneous involvement
alone or in overlap with another connective tissue disease
- Raynaud's disease with either a positive ANA test or abnormal
- Localized Scleroderma: any of the following: plaque morphea,
generalized morphea, deep (subcutaneous) morphea, linear morphea (including "en coupe de sabre"), or eosinophilic fasciitis.
- diagnosis of any of the above mentioned skin conditions
- first symptom of disease before age 16
- current age less than 30
- The Registry was started with the help of a grant from the Scleroderma Foundation. The Registry is currently enrolling new patients.
- The participant will be asked to complete a three-page health
assessment questionnaire once each year.
- The participant's physician will be asked to complete a follow-up
form once each year.
- The participant will be asked to provide a one-time only blood
sample, which can be drawn at any location of the participant's choice.
- The participants blood will be examined for antibodies known
to occur in these diseases
- The blood and data will be de-identified and stored for future
- No genetic research will be done as part of this project.
- The Registry Coordinator may contact the participant with information
regarding other scleroderma-related research projects.
- Participants will not be compensated for participation in this
study, nor will there be any costs to the participant.
If you are interested in being involved in this research study, or interested in receiving more information, please contact Jennifer Jablon, the Registry Coordinator, toll free at 1-800-603-8960, or by e-mail at firstname.lastname@example.org
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