The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is a study to learn more about a rare disease called Hereditary Hemorrhagic Telangiectasia (HHT). This disease causes unusual blood vessels to form in the body, leading to problems like bleeding and strokes. The study will collect information from patients for up to 10 years to understand how the disease changes over time. This information will help improve treatments for HHT. Patients will be asked questions about their health once a year and can provide information from their medical records. The study will also help find people for future research, but joining those studies is optional. Participants can choose to leave the study anytime, and their information is kept safe and private. The study is supported by the U.S. Department of Health.
- Participation lasts up to 10 years, with yearly check-ins.
- Participants won't be forced to join future studies.
- Information is kept confidential and secure.