Comprehensive HHT Outcomes Registry of the United States (CHORUS)
CHORUS
CHORUS: Comprehensive HHT (Hereditary Hemorrhagic Telangiectasia) Outcomes Registry of the United States
1 other identifier
observational
10,000
1 country
16
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Nov 2023
Longer than P75 for all trials
16 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
November 13, 2023
CompletedFirst Submitted
Initial submission to the registry
January 22, 2024
CompletedFirst Posted
Study publicly available on registry
February 14, 2024
CompletedPrimary Completion
Last participant's last visit for primary outcome
November 1, 2033
ExpectedStudy Completion
Last participant's last visit for all outcomes
November 1, 2033
June 13, 2025
June 1, 2025
10 years
January 22, 2024
June 10, 2025
Conditions
Outcome Measures
Primary Outcomes (2)
Comprehensive Baseline Data Collection using HHT Baseline Assessment Scale
Utilizing the "HHT Baseline Assessment Scale," this measure focuses on recruiting a diverse cohort of HHT patients across North America. Comprehensive baseline clinical, demographic, and lifestyle data will be collected and entered into CHORUS. The data, aggregated as mean change from baseline using the scale, will serve as a foundational resource for future clinical translational studies, addressing the urgent need for natural history data in HHT.
10 years
Prospective Longitudinal Clinical Outcomes Assessment using HHT Clinical Outcomes Scale
Utilizing the "HHT Clinical Outcomes Scale," this measure aims to prospectively and longitudinally assess the clinical outcomes of HHT patients. Determinants such as demographic factors, environmental influences, lifestyle choices, comorbidities, medications, HHT-genotype, and organ vascular malformations (VMs) will be measured. The data, aggregated as mean change from baseline using the scale, will enhance understanding and accelerate the development of new diagnostic and treatment options for HHT.
10 years
Secondary Outcomes (4)
Identify severe morbidity and mortality outcomes related to HHT using HHT Clinical Outcomes Scale
10 years
Epistaxis Characterization with Epistaxis Severity Scale
10 years
Organ Vascular Malformation (VM) Development and Growth Assessment using Organ VMs Assessment Tool
10 years
Treatment Outcomes Assessment with HHT Treatment Outcomes Scale
10 years
Study Arms (1)
HHT patients
Those diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing
Eligibility Criteria
All patients evaluated and diagnosed with HHT in the U.S. will be eligible to participate in the study.
You may qualify if:
- 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.
You may not qualify if:
- Unable to provide informed consent or informed consent via a parent or legally authorized representative.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Cure HHTlead
- Augusta Universitycollaborator
- The Cleveland Cliniccollaborator
- Mayo Cliniccollaborator
- Massachusetts General Hospitalcollaborator
- Columbia Universitycollaborator
- Oregon Health and Science Universitycollaborator
- University of California, Los Angelescollaborator
- University of California, San Franciscocollaborator
- University of Colorado, Denvercollaborator
- University of North Carolina, Chapel Hillcollaborator
- University of Pennsylvaniacollaborator
- University of Texascollaborator
- University of Utahcollaborator
- Washington University School of Medicinecollaborator
- Yale Universitycollaborator
- Health Resources and Services Administration (HRSA)collaborator
- University of Alabama at Birminghamcollaborator
Study Sites (16)
University of Alabama at Birmingham
Birmingham, Alabama, 35294, United States
University of California, Los Angeles
Los Angeles, California, 90095, United States
University of California, San Francisco
San Francisco, California, 94107, United States
University of Colorado, Denver
Aurora, Colorado, 80045, United States
Yale University
New Haven, Connecticut, 06520, United States
Augusta University
Augusta, Georgia, 30912, United States
Massachusetts General Hospital
Boston, Massachusetts, 02114, United States
Mayo Clinic
Rochester, Minnesota, 55905, United States
Washington University School of Medicine
St Louis, Missouri, 63110, United States
Columbia University
New York, New York, 10032, United States
University of North Carolina, Chapel Hill
Chapel Hill, North Carolina, 27599, United States
The Cleveland Clinic
Cleveland, Ohio, 44106, United States
Oregon Health and Science University
Portland, Oregon, 97239, United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19104, United States
University of Texas Southwestern
Dallas, Texas, 75390, United States
University of Utah
Salt Lake City, Utah, 84132, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Melissa A Dickey, MSN
Cure HHT
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 10 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
January 22, 2024
First Posted
February 14, 2024
Study Start
November 13, 2023
Primary Completion (Estimated)
November 1, 2033
Study Completion (Estimated)
November 1, 2033
Last Updated
June 13, 2025
Record last verified: 2025-06