The purpose is to determine the prevalence of scleroderma in this region, that is, how many patients have this condition. This is important information to help us find the cause of scleroderma. The other, and equally important, reason for the Scleroderma Registry, is to encourage and support scleroderma research by doctors and scientists all over the country. People in the Registry may be contacted at times to see if they would be willing to participate in a research project by providing a tube of blood or by filling out questionnaires. However, patients in the Registry may choose not to participate in these research projects if they wish.
Participation is voluntary.
We do ask you to permit someone from the Registry to review your medical record at your doctor's office or at a hospital where you were admitted in order to get information about laboratory tests and x-rays. If you decide to participate in a research project that requires getting a tube of blood drawn, this can be arranged through your doctor's office or at a hospital or lab close to where you live. Doctors and scientists interested in conducting research about scleroderma will contact the Registry. The Registry Coordinator will then send letters to patients briefly describing the research project and asking if the patients would be interested in participating. People who are willing to participate are then put in touch with the researchers.