Hereditary Hemorrhagic Telangiectasia (HHT) is an autosomal dominant disorder that causes abnormal blood vessels to form throughout the body. In HHT, small abnormal blood vessels called telangiectasias occur in the skin and mucous membranes, while larger vessel abnormalities, called arteriovenous malformations (AVM), occur in various organs, including the brain, where they can cause bleeding and stroke. Prior data on hemorrhage risk and predictors have primarily come from small single center studies or inferred from sporadic brain AVM studies, which may not accurately reflect risk in HHT patients.
Thus, the purpose of this study is to learn more about brain AVMs (BAVMs) and bleeding in HHT. In this multi-center, longitudinal study, we collect data to study risk factors for rupture of BAVMs and also for other bleeding and features of HHT disease, including genetics and imaging characteristics of the BAVMs.
For more information about the study
For more information about HHT
To request a clinic appointment at the UCSF HHT Center of Excellence
