Comprehensive HHT Outcomes Registry of the United States (CHORUS) (NCT06259292)
CHORUS: Comprehensive HHT (Hereditary Hemorrhagic Telangiectasia) Outcomes Registry of the United States
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: University of Alabama at Birmingham — Birmingham, Alabama
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (16 Sites)
- University of Alabama at Birmingham — Birmingham, Alabama
- University of California, Los Angeles — Los Angeles, California
- University of California, San Francisco — San Francisco, California
- University of Colorado, Denver — Aurora, Colorado
- Yale University — New Haven, Connecticut
- Augusta University — Augusta, Georgia
- Massachusetts General Hospital — Boston, Massachusetts
- Mayo Clinic — Rochester, Minnesota
- Washington University School of Medicine — St Louis, Missouri
- Columbia University — New York, New York
- University of North Carolina, Chapel Hill — Chapel Hill, North Carolina
- The Cleveland Clinic — Cleveland, Ohio
- Oregon Health and Science University — Portland, Oregon
- University of Pennsylvania — Philadelphia, Pennsylvania
- University of Texas Southwestern — Dallas, Texas
- University of Utah — Salt Lake City, Utah
📞 Contact the Study Coordinator
Phone: (410) 357-9932
Email: nolie.krock@curehht.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Hereditary Hemorrhagic Telangiectasia
- CHORUS - Comprehensive HHT Outcomes Registry of the United States (Formerly OUR HHT Registry) — Toronto, Ontario
- Bevacizumab In Hereditary Hemorrhagic Telangiectasia — Boston, Massachusetts
- A Study to Evaluate ALN-6400 in Healthy Volunteers and Patients With Hereditary Hemorrhagic Telangiectasia (HHT) — Birmingham, Alabama
- Effects of Pazopanib on Hereditary Hemorrhagic Telangiectasia Related Epistaxis and Anemia (Paz) — Los Angeles, California
- DIAG723 in Adults With Hereditary Hemorrhagic Telangiectasia — Camperdown, New South Wales
Explore by condition: All Hereditary Hemorrhagic Telangiectasia clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.