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Massive HHT registry aims to unlock secrets of rare bleeding disorder

NCT ID NCT06259292

Knowledge-focused Sponsor: Cure HHT Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 10,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Nov 2023

Expected to finish

Nov 2033

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

All patients evaluated and diagnosed with HHT in the U.S. will be eligible to participate in the study.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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Conditions

The condition(s) this trial relates to.

arteriovenous hemangioma/malformation arteriovenous malformations of the brain Epistaxis Gastrointestinal Hemorrhage hereditary hemorrhagic telangiectasia telangiectasis vascular malformation

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Arteriovenous malformations Cerebral arteriovenous malformations Epistaxis Gastrointestinal bleeding Hereditary hemorrhagic telangiectasia Telangiectasia Vascular malformation

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    16 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Augusta University

    RECRUITING

    Augusta, Georgia, 30912, United States

  • Columbia University

    RECRUITING

    New York, New York, 10032, United States

  • Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, 02114, United States

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, 55905, United States

  • Oregon Health and Science University

    RECRUITING

    Portland, Oregon, 97239, United States

  • The Cleveland Clinic

    RECRUITING

    Cleveland, Ohio, 44106, United States

  • University of Alabama at Birmingham

    RECRUITING

    Birmingham, Alabama, 35294, United States

  • University of California, Los Angeles

    RECRUITING

    Los Angeles, California, 90095, United States

  • University of California, San Francisco

    RECRUITING

    San Francisco, California, 94107, United States

  • University of Colorado, Denver

    RECRUITING

    Aurora, Colorado, 80045, United States

  • University of North Carolina, Chapel Hill

    RECRUITING

    Chapel Hill, North Carolina, 27599, United States

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • University of Texas Southwestern

    RECRUITING

    Dallas, Texas, 75390, United States

  • University of Utah

    RECRUITING

    Salt Lake City, Utah, 84132, United States

  • Washington University School of Medicine

    RECRUITING

    St Louis, Missouri, 63110, United States

  • Yale University

    RECRUITING

    New Haven, Connecticut, 06520, United States

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