Comprehensive HHT Outcomes Registry of the United States (CHORUS)

Recruiting

• Conditions: Hereditary Hemorrhagic Telangiectasia; Arteriovenous Malformations; Telangiectasia; Epistaxis; GastroIntestinal Bleeding; Cerebral Arteriovenous Malformations; Vascular Malformation

• Registration Number: NCT06259292
• Lead Sponsor: Cure HHT

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2024-1-22
• Last Update Posted: 2 September 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 10000

Inclusion Criteria

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

Exclusion Criteria

Not provided

Study & Design

• Study Type: Observational [Patient Registry]
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Comprehensive Baseline Data Collection using HHT Baseline Assessment Scale;Prospective Longitudinal Clinical Outcomes Assessment using HHT Clinical Outcomes Scale

Secondary Outcome Measures

Name	Time	Method
Identify severe morbidity and mortality outcomes related to HHT using HHT Clinical Outcomes Scale;Epistaxis Characterization with Epistaxis Severity Scale;Organ Vascular Malformation (VM) Development and Growth Assessment using Organ VMs Assessment Tool;Treatment Outcomes Assessment with HHT Treatment Outcomes Scale