Comprehensive Registry for Hereditary Hemorrhagic Telangiectasia HHT in the United States Tracking Long-Term Outcomes and Treatments

What this Trial Is About

Researchers are conducting the Comprehensive HHT Outcomes Registry of the United States CHORUS, an observational study focusing on Hereditary Hemorrhagic Telangiectasia HHT, a rare genetic condition causing abnormal blood vessels in various organs. The study aims to better understand HHT, its symptoms, complications, and how it affects peoples lives. By collecting detailed information over time, the study hopes to improve knowledge of the disease and assist in developing new treatments. Participants diagnosed with HHT based on specific criteria or genetic testing will be included in the registry. The study will collect long-term data both retrospectively and prospectively from about 10,000 patients across multiple centers in the U.S. Over up to 10 years, participants will provide information through medical records and yearly questionnaires, helping researchers track changes in health, treatments, and symptoms. During participation, individuals will allow access to their medical records and answer study questions at enrollment and annually for up to 10 years or until the study ends. The data collected includes demographic details, diagnosis, family history, test results, symptoms, and treatments. The main outcomes measured over 10 years include baseline health status and clinical outcomes using specific assessment scales. The study also monitors severity of nosebleeds, development of vascular malformations, treatment results, and serious health events related to HHT.

Comprehensive HHT Outcomes Registry of the United States (CHORUS)