The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is a study for people with Hereditary Hemorrhagic Telangiectasia (HHT). HHT is a rare genetic disorder that causes **abnormal blood vessels** in the body, leading to bleeding and other serious issues. This study wants to learn more about HHT and its effects on people's lives. By collecting information over time, researchers hope to find better treatments.
Participants will give permission for their medical info to be collected, like test results and symptoms. They will answer questions by phone or in person every year for up to 10 years. The study is also a way to find people for future research, but joining those studies is optional.
- Length of Study: Up to 10 years
- Data Collection: Yearly check-ins by phone or at a clinic
- Participation: Voluntary and can be withdrawn at any time
Only those diagnosed with HHT can join, and they must be able to give consent themselves or through a guardian. The study is safe and private, and it's funded by a U.S. government grant.