It's full of information about scleroderma. This page was posted at the request of Dr. Maureen Mayes, who is Principal Investigator of the Scleroderma Registry. A guide for patients and families. The Registry is a computer list of all scleroderma patients in the tricounty area of metropolitan Detroit, including Wayne, Oakland and Macomb Counties. It contains information including the the patient's name, gender, ethnic background, social security number, address, phone number, date of birth, as well as information such as date of diagnosis, type and severity of scleroderma, and results of some laboratory tests and x-rays.
All information is kept confidential.
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.