Actively Recruiting
CHORUS: Comprehensive Hereditary Hemorrhagic Telangiectasia Outcomes Registry of the United States
Led by Cure HHT · Updated on 2025-06-13
10000
Participants Needed
16
Research Sites
N/A
Total Duration
On this page
Sponsors
C
Cure HHT
Lead Sponsor
A
Augusta University
Collaborating Sponsor
AI-Summary
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.
CONDITIONS
Brief Title
Comprehensive HHT Outcomes Registry of the United States (CHORUS)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) based on Curacao diagnostic criteria or genetic testing
- Able to provide informed consent or have consent provided by a parent or legally authorized representative
You will not qualify if you...
- Unable to provide informed consent or have consent provided by a parent or legally authorized representative
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 10 years
Participants diagnosed with HHT are observed to collect comprehensive baseline and longitudinal clinical data to better understand the disease and its impact over time.
Visits scheduled as part of routine clinical care and research assessments over 10 years
Trial Site Locations
Total: 16 locations
1
University of Alabama at Birmingham
Birmingham, Alabama, United States, 35294
Actively Recruiting
2
University of California, Los Angeles
Los Angeles, California, United States, 90095
Actively Recruiting
3
University of California, San Francisco
San Francisco, California, United States, 94107
Actively Recruiting
4
University of Colorado, Denver
Aurora, Colorado, United States, 80045
Actively Recruiting
5
Yale University
New Haven, Connecticut, United States, 06520
Actively Recruiting
6
Augusta University
Augusta, Georgia, United States, 30912
Actively Recruiting
7
Massachusetts General Hospital
Boston, Massachusetts, United States, 02114
Actively Recruiting
8
Mayo Clinic
Rochester, Minnesota, United States, 55905
Actively Recruiting
9
Washington University School of Medicine
St Louis, Missouri, United States, 63110
Actively Recruiting
10
Columbia University
New York, New York, United States, 10032
Actively Recruiting
11
University of North Carolina, Chapel Hill
Chapel Hill, North Carolina, United States, 27599
Actively Recruiting
12
The Cleveland Clinic
Cleveland, Ohio, United States, 44106
Actively Recruiting
13
Oregon Health and Science University
Portland, Oregon, United States, 97239
Actively Recruiting
14
University of Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
15
University of Texas Southwestern
Dallas, Texas, United States, 75390
Actively Recruiting
16
University of Utah
Salt Lake City, Utah, United States, 84132
Actively Recruiting
Research Team
M
Melissa A Dickey, MSN
N
Nolie Krock, MSc
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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