Comprehensive HHT Outcomes Registry of the United States (CHORUS)

Conditions

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

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Accepted

Study Details

The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is an observational registry of patients diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT). The purpose of this study is to better understand HHT, the symptoms and complications it causes, and the impact the disease has on people's lives. The investigators will collect long-term information about the participant, allowing us to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease. Another important goal of the study is to provide a way to contact people to participate in future clinical trials and other research. The registry will be a centralized resource for recruitment for clinical trials. People in the registry will not be obligated to join any of these additional studies, but if interested, can agree to be contacted if they may be eligible for a study. Participants will: * Be asked to provide permission to collect information from their medical records, including things like demographic information, diagnosis information, family history, test results, treatment information, symptoms, complications, lifestyle and other relevant medical information. * Be asked study-related questions by phone or at a clinic visit. * Be asked study-related questions every year after enrollment for up to 10 years or until the study ends. A member of the study team will communicate with participants by phone or at clinic visits to collect information regarding any changes to their health over the previous year/s including new test results, treatment information, symptoms, and complications from HHT.

Key Dates

Start date

Nov 13, 2023

Status verified

Jun 2025

Primary completion

Nov 30, 2033

Completion

Nov 30, 2033

Study Design

Enrollment

10,000 participants (estimated)

Arms

• Arm: HHT patients
  Those diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing

Primary Outcome Measure

Comprehensive Baseline Data Collection using HHT Baseline Assessment Scale [ Time Frame: 10 years ]

Central Contacts

• Melissa A Dickey, MSN
  410-357-9932
  [email protected]
• Nolie Krock, MSc
  410-357-9932
  [email protected]

Locations (16)

Find similar trials in Birmingham, AL

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