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Comprehensive HHT Outcomes Registry of the United States (CHORUS)
NCT06259292 · View on ClinicalTrials.gov ↗
Study 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.
Conditions Studied
Study Locations (16)
California
- University of California, Los Angeles — Los Angeles
- University of California, San Francisco — San Francisco
Alabama
- University of Alabama at Birmingham — Birmingham
Colorado
- University of Colorado, Denver — Aurora
Connecticut
- Yale University — New Haven
Georgia
- Augusta University — Augusta
Massachusetts
- Massachusetts General Hospital — Boston
Minnesota
- Mayo Clinic — Rochester
Missouri
- Washington University School of Medicine — St Louis
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 10,000 participants |
| Start Date | 2023-11-13 |
| Est. Completion | 2033-11 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT06259292
The ClinicalTrials.gov registry entry for NCT06259292 describes a study currently listed as recruiting. It is categorized as an unspecified phase, which is the standard way researchers label where a study sits along the investigational pathway from early safety work through later efficacy and post-marketing evaluation. The registered enrollment target is 10,000 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is Cure HHT, which has 2 total studies on file at ClinicalTrials.gov, and sponsors are the parties responsible for study design, oversight, and regulatory filings.
The record links to 7 conditions, with Hereditary Hemorrhagic Telangiectasia appearing as the primary indexed condition, and to 0 interventions. Interventions can include drugs, devices, procedures, behavioral programs, or observational arms, and each is tracked as a separate registry field so that downstream queries can filter accurately. When a trial lists multiple interventions, it usually reflects a multi-arm design or a comparison protocol rather than a single treatment being tested in isolation. The brief summary published in the registry is the clearest source of protocol intent and should be read before drawing conclusions from any sidebar tags.
Geographic footprint matters for practical reasons: NCT06259292 reports 16 study locations spanning 15 distinct geographic areas — top geographies include California, Alabama, Colorado. A larger site network tends to correlate with broader recruitment capacity, but it does not imply anything about study quality, and site-level enrollment status can diverge from the overall registry status shown above. Every data point on this page comes from the public ClinicalTrials.gov dataset and is reproduced here for reference only; it is not a medical recommendation, an endorsement of the sponsor, or an invitation to enroll. Verify current status, eligibility criteria, and contact details directly at ClinicalTrials.gov, and discuss any participation decision with your own healthcare provider.
Frequently Asked Questions
What is clinical trial NCT06259292 about?
NCT06259292 is a clinical study titled "Comprehensive HHT Outcomes Registry of the United States (CHORUS)". 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 o...
What is the current status of trial NCT06259292?
This trial is currently recruiting. The enrollment target is 10,000 participants. The study started on 2023-11-13. Estimated completion is 2033-11.
What conditions does trial NCT06259292 study?
This clinical trial studies the following conditions: Hereditary Hemorrhagic Telangiectasia, Epistaxis, Arteriovenous Malformations, Telangiectasia, GastroIntestinal Bleeding. These conditions were identified from the trial registry and reflect the primary focus areas of the research.
Who is sponsoring clinical trial NCT06259292?
This trial is sponsored by Cure HHT, which has 2 total clinical trials registered on ClinicalTrials.gov. The sponsor is responsible for the study's design, funding, and regulatory compliance.
Where is trial NCT06259292 being conducted?
This trial has 16 study locations across Alabama, California, Colorado, Connecticut, Georgia. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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