CHORUS - Comprehensive HHT Outcomes Registry of the United States (Formerly OUR HHT Registry) (NCT04150822)
Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry
🩺 Plain-English Summary (8th-Grade Level)
The goal of this study is to better understand HHT, the symptoms and complications it causes ("outcomes") and how the disease impacts people's lives. The investigators are aiming to recruit and gather information together in the Registry from 1,000 HHT patients from four HHT Centres of Excellence in North America. The Investigators will collect long-term information about the people in the Registry, allowing the investigators to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease.
Who can join: To join this study, participants generally need to meet the listed inclusion criteria (3 items) and avoid the listed exclusions (2 items).
Location: St. Michael's Hospital — Toronto, Ontario
Age range: 18 Years
🧪 Interventions in This Study
- Registry and Saliva sample (OTHER)
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistCheck every box below. If you can check all of them, you may meet the study's basic screening requirements (final eligibility is confirmed by the site team).
Usually NOT eligible if any of the following apply:
- Exclusion Criteria:
- Participants unable to give informed consent either in person or with a substitute decision maker
🔍 Extracted verbatim from the official NIH eligibility criteria. Always confirm with the study coordinator.
📍 All Participating Trial Locations (1 Sites)
- St. Michael's Hospital — Toronto, Ontario
💰 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
- DIAG723 in Adults With Hereditary Hemorrhagic Telangiectasia — Camperdown, New South Wales
- Comprehensive HHT Outcomes Registry of the United States (CHORUS) — Birmingham, Alabama
- 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
Explore by condition: All Hereditary Hemorrhagic Telangiectasia clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Review the official NIH record below to find the coordinating site.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.