CHORUS Comprehensive Hereditary Hemorrhagic Telangiectasia Outcomes Registry of the United States

What this Trial Is About

Researchers are conducting the Comprehensive HHT Outcomes Registry of the United States CHORUS to better understand Hereditary Hemorrhagic Telangiectasia HHT, a rare genetic disorder causing abnormal blood vessels and related complications like bleeding, stroke, and heart failure. This observational study aims to collect long-term data on symptoms, complications, and the impact of HHT on patients lives, helping improve knowledge and treatment options for the disease. Participants diagnosed with HHT through Curacao diagnostic criteria or genetic testing will be enrolled in this registry. The study will gather information retrospectively and prospectively over a 10-year period, collaborating with multiple HHT Centers of Excellence across the U.S. The registry will also serve as a centralized resource to help recruit participants for future clinical trials and research studies related to HHT. During the study, participants will provide permission to access their medical records and answer study-related questions by phone or clinic visits annually for up to 10 years. Researchers will collect data on demographics, diagnosis, family history, test results, treatments, symptoms, and complications. The main outcomes measured include baseline data and longitudinal clinical outcomes related to HHT, with additional assessments of severe morbidity, bleeding severity, vascular malformation growth, and treatment outcomes. Participants can withdraw at any time, and data confidentiality is prioritized.

Comprehensive HHT Outcomes Registry of the United States (CHORUS)