Comprehensive HHT Outcomes Registry of the United States (CHORUS)

Launched by CURE HHT · Feb 6, 2024

Keywords

ClinConnect Summary

The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is a study aimed at understanding Hereditary Hemorrhagic Telangiectasia (HHT), a condition that causes abnormal blood vessel formations and can lead to bleeding. This study will gather long-term information from patients diagnosed with HHT to learn more about the symptoms, complications, and how the disease affects daily life. By collecting this data, researchers hope to improve treatments and support for people living with HHT. Additionally, the registry will serve as a way to reach out to participants for future research opportunities, although joining additional studies is completely optional.

To be eligible for this study, participants must have a confirmed diagnosis of HHT and be able to give their consent, either themselves or through a parent or legal representative. Once enrolled, participants will share information from their medical records and answer questions about their health, both during their initial visit and once a year for up to ten years. This ongoing communication will help researchers track changes in health and understand the progression of HHT better. If you or someone you know has HHT and is interested in contributing to this important research, consider participating!

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing.
• • Able to provide informed consent or informed consent via a parent or legally authorized representative due to their age or medical condition.
• Exclusion Criteria:
• • Unable to provide informed consent or informed consent via a parent or legally authorized representative.