Registry for patients with Hereditary Hemorrhagic Telangiectasia
CHORUS: Comprehensive HHT (Hereditary Hemorrhagic Telangiectasia) Outcomes Registry of the United States
Cure HHT · NCT06259292
This study is collecting information from people with Hereditary Hemorrhagic Telangiectasia to better understand the condition and help improve treatments in the future.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 10000 (estimated) |
| Sex | All |
| Sponsor | Cure HHT (other) |
| Locations | 16 sites (Birmingham, Alabama and 15 other locations) |
| Trial ID | NCT06259292 on ClinicalTrials.gov |
What this trial studies
The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is an observational registry aimed at understanding Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic disorder that causes abnormal blood vessel formation. This initiative collects long-term data on patients to track the disease's progression, symptoms, and complications, ultimately aiming to enhance treatment strategies. The registry will also serve as a resource for recruiting participants for future clinical trials related to HHT. By gathering comprehensive information, the study seeks to improve patient management and contribute to the development of novel therapies.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with HHT based on established diagnostic criteria or genetic testing.
Not a fit: Patients who are unable to provide informed consent or whose representatives cannot provide consent will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved understanding and management of HHT, potentially resulting in better treatment options for patients.
How similar studies have performed: Other studies focusing on natural history registries for rare diseases have shown promise in improving understanding and treatment, suggesting that this approach could be beneficial for HHT as well.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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. Exclusion Criteria: * Unable to provide informed consent or informed consent via a parent or legally authorized representative.
Where this trial is running
Birmingham, Alabama and 15 other locations
- University of Alabama at Birmingham — Birmingham, Alabama, United States (RECRUITING)
- University of California, Los Angeles — Los Angeles, California, United States (RECRUITING)
- University of California, San Francisco — San Francisco, California, United States (RECRUITING)
- University of Colorado, Denver — Aurora, Colorado, United States (RECRUITING)
- Yale University — New Haven, Connecticut, United States (RECRUITING)
- Augusta University — Augusta, Georgia, United States (RECRUITING)
- Massachusetts General Hospital — Boston, Massachusetts, United States (RECRUITING)
- Mayo Clinic — Rochester, Minnesota, United States (RECRUITING)
- Washington University School of Medicine — St Louis, Missouri, United States (RECRUITING)
- Columbia University — New York, New York, United States (RECRUITING)
- University of North Carolina, Chapel Hill — Chapel Hill, North Carolina, United States (RECRUITING)
- The Cleveland Clinic — Cleveland, Ohio, United States (RECRUITING)
- Oregon Health and Science University — Portland, Oregon, United States (RECRUITING)
- University of Pennsylvania — Philadelphia, Pennsylvania, United States (RECRUITING)
- University of Texas Southwestern — Dallas, Texas, United States (RECRUITING)
- University of Utah — Salt Lake City, Utah, United States (RECRUITING)
Study contacts
- Principal investigator: Melissa A Dickey, MSN — Cure HHT
- Study coordinator: Melissa A Dickey, MSN
- Email: melissa.dickey@curehht.org
- Phone: 410-357-9932
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Hereditary Hemorrhagic Telangiectasia, Arteriovenous Malformations, Telangiectasia, Epistaxis, GastroIntestinal Bleeding, Cerebral Arteriovenous Malformations, Vascular Malformation