Comprehensive HHT Outcomes Registry of the United States (CHORUS)
NCT ID: NCT06259292
Last Updated: 2025-06-13
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
10000 participants
OBSERVATIONAL
2023-11-13
2033-11-30
Brief Summary
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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.
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Detailed Description
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A natural history registry for HHT has significant implications for improving the understanding and management of this rare genetic disorder. The purpose of this study is to better understand HHT, the symptoms and complications it causes ("outcomes"), and to understand how the disease impacts people's lives. The investigators hypothesize that a natural history registry for HHT will improve our understanding of the disease, lead to better management of patients, and ultimately, contribute to developing novel therapies to treat this disease.
The investigators will collaborate with multiple HHT Centers of Excellence across the U.S. to establish a comprehensive registry of HHT patients. The study aims to enroll approximately 10,000 HHT patients over a 10-year period. Longitudinal data will be collected both retrospectively and prospectively, with a focus on increasing the understanding of this rare disease, accelerating the development of new diagnostic and treatment options, and working collaboratively with clinicians who care for individuals with HHT to identify and address gaps in the system of care, especially those from underserved populations.
The study aims to serve as a centralized resource for future clinical trials and research in HHT. Data security and confidentiality are prioritized, and participants have the option to withdraw from the study at any time. The study is funded by the U.S. Department of Health Resources and Service Administration (HRSA) through a grant awarded to Cure HHT.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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HHT patients
Those diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* Able to provide informed consent or informed consent via a parent or legally authorized representative due to their age or medical condition.
Exclusion Criteria
ALL
Yes
Sponsors
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Augusta University
OTHER
The Cleveland Clinic
OTHER
Mayo Clinic
OTHER
Massachusetts General Hospital
OTHER
Columbia University
OTHER
Oregon Health and Science University
OTHER
University of California, Los Angeles
OTHER
University of California, San Francisco
OTHER
University of Colorado, Denver
OTHER
University of North Carolina, Chapel Hill
OTHER
University of Pennsylvania
OTHER
University of Texas
OTHER
University of Utah
OTHER
Washington University School of Medicine
OTHER
Yale University
OTHER
Health Resources and Services Administration (HRSA)
FED
University of Alabama at Birmingham
OTHER
Cure HHT
OTHER
Responsible Party
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Principal Investigators
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Melissa A Dickey, MSN
Role: PRINCIPAL_INVESTIGATOR
Cure HHT
Locations
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University of Alabama at Birmingham
Birmingham, Alabama, United States
University of California, Los Angeles
Los Angeles, California, United States
University of California, San Francisco
San Francisco, California, United States
University of Colorado, Denver
Aurora, Colorado, United States
Yale University
New Haven, Connecticut, United States
Augusta University
Augusta, Georgia, United States
Massachusetts General Hospital
Boston, Massachusetts, United States
Mayo Clinic
Rochester, Minnesota, United States
Washington University School of Medicine
St Louis, Missouri, United States
Columbia University
New York, New York, United States
University of North Carolina, Chapel Hill
Chapel Hill, North Carolina, United States
The Cleveland Clinic
Cleveland, Ohio, United States
Oregon Health and Science University
Portland, Oregon, United States
University of Pennsylvania
Philadelphia, Pennsylvania, United States
University of Texas Southwestern
Dallas, Texas, United States
University of Utah
Salt Lake City, Utah, United States
Countries
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Central Contacts
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Facility Contacts
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Other Identifiers
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HHT001
Identifier Type: -
Identifier Source: org_study_id
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