GCO# 03-1256, Evaluation of a Web-based, Multi-media Tutorial for Fabry Disease
IRB approval expires 2/28/05.
Principal Investigator: Robert J. Desnick, M.D., Ph.D., Professor & Chairman, Department of Human Genetics, Mount Sinai School of Medicine, NY, NY.
The International Center for Fabry Disease at the Mount Sinai School of Medicine, New York, is devoted to the care of patients with Fabry disease and their families.
We are currently conducting a research study (GCO# 03-1256, Evaluation of a Web-based, Multi-media Tutorial for Fabry Disease) to determine whether a web-based tutorial is an effective way of teaching Fabry patients, their family members and other individuals about the genetics, symptoms and treatment of Fabry disease. If you are a male with Fabry disease, female carrier, family member of someone with Fabry disease or an individual interested in learning more about Fabry disease, then you qualify to participate in this research study.
If you are interested in participating in this research study, or would like more information, please contact Sherry Boyar at 212-659-6741 or by email at Sherry.Boyar@mssm.edu or visit the Fabry Disease Tutorial website at: http://fusion.mssm.edu/genetics/fabry/tutorial/index.htm
You are under no obligation to participate and there is no compensation for participation in this study.