Massive HHT registry aims to unlock secrets of rare bleeding disorder
NCT ID NCT06259292
First seen Jul 17, 2026 · Last updated Jul 17, 2026
Summary
This study creates a large registry of people diagnosed with hereditary hemorrhagic telangiectasia (HHT), a condition causing abnormal blood vessels and bleeding. Researchers will collect medical records and annual health updates for up to 10 years to understand how the disease changes over time and what factors influence it. The registry also serves as a way to invite participants to future clinical trials, though joining those is optional.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this registry could provide crucial data to improve treatments and help recruit participants for future clinical trials.
- What could go wrong
- As an observational registry, it does not test any treatment directly, so it may not lead to immediate breakthroughs. Data quality depends on participant reporting and medical records.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Locations
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Augusta University
RECRUITINGAugusta, Georgia, 30912, United States
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Columbia University
RECRUITINGNew York, New York, 10032, United States
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Massachusetts General Hospital
RECRUITINGBoston, Massachusetts, 02114, United States
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Mayo Clinic
RECRUITINGRochester, Minnesota, 55905, United States
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Oregon Health and Science University
RECRUITINGPortland, Oregon, 97239, United States
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The Cleveland Clinic
RECRUITINGCleveland, Ohio, 44106, United States
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University of Alabama at Birmingham
RECRUITINGBirmingham, Alabama, 35294, United States
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University of California, Los Angeles
RECRUITINGLos Angeles, California, 90095, United States
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University of California, San Francisco
RECRUITINGSan Francisco, California, 94107, United States
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University of Colorado, Denver
RECRUITINGAurora, Colorado, 80045, United States
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University of North Carolina, Chapel Hill
RECRUITINGChapel Hill, North Carolina, 27599, United States
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University of Pennsylvania
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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University of Texas Southwestern
RECRUITINGDallas, Texas, 75390, United States
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University of Utah
RECRUITINGSalt Lake City, Utah, 84132, United States
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Washington University School of Medicine
RECRUITINGSt Louis, Missouri, 63110, United States
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Yale University
RECRUITINGNew Haven, Connecticut, 06520, United States
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More trials for these conditions
Other studies related to the condition(s) this trial covers.
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- Redesigned catheter aims to make angiograms safer and more precise
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- New ointment could tame HHT nosebleeds
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