“Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry”
The goal of this study is to better understand HHT, the symptoms and complications it causes ("outcomes") and how the disease impacts people's lives. The investigators are aiming to recruit and gather information together in the Registry from 1,000 HHT patients from four HHT Centres of Excellence in North America. The Investigators will collect long-term information about the people in the Registry, allowing the investigators to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease.
Registry and Saliva sample
Non-interventional registry with saliva sample collected for DNA analysis
Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry