Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

Large study aims to predict brain bleeds in rare HHT disorder

NCT ID NCT01158807

Knowledge-focused Sponsor: Unity Health Toronto Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looked at over 2,200 people with hereditary hemorrhagic telangiectasia (HHT), a rare condition that causes abnormal blood vessels. The goal was to find out what makes some people with HHT more likely to have a brain bleed. Researchers collected health information, blood samples, and genetic data to better understand these risks and improve future care.

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

2,272 people

The number who actually took part.

Started

Apr 2010

Finished

Jun 2025

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

HHT individuals with a history of brain arteriovenous malformation. HHT individuals without a history of brain arteriovenous malformation.

Ages

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

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Definite clinical HHT diagnosis (at least 3 Curacao criteria)or genetic diagnosis of HHT or * Definite clinical HHT diagnosis (at least 3 Curacao criteria) or genetic diagnosis of HHT and Presence of Brain Arteriovenous Malformation * Able to provide informed consent Curacao criteria: 1. spontaneous recurrent nosebleeds; 2. mucocutaneous telangiectasia at characteristic sites (lips, oral cavity or the nose); 3. visceral involvement such as pulmonary, hepatic or CNS BAVM; and (d) an affected first degree relative by same criteria. Willingness * Willingness to participate in the study and ability to give informed consent Exclusion Criteria: * Patients not complying with Inclusion criteria

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Hereditary hemorrhagic telangiectasia are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

Conditions

The condition(s) this trial relates to.

arteriovenous malformations of the brain hereditary hemorrhagic telangiectasia

As listed by the trial registrant

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

Hereditary hemorrhagic telangiectasia

Contacts and locations

Locations

  • Barrow Neurological Institute

    Phoenix, Arizona, 85013, United States

  • Cincinnati Children's Hospital Medical Center

    Cincinnati, Ohio, 45229, United States

  • David Geffen School of Medicine at University of California, Los Angeles

    Los Angeles, California, 90095, United States

  • Georgia Regents University

    Augusta, Georgia, 30912-3135, United States

  • HHT Foundation International, Inc.

    Monkton, Maryland, 21111, United States

  • Hospital for Sick Children

    Toronto, Ontario, M5G 1X8, Canada

  • Johns Hopkins University School of Medicine

    Baltimore, Maryland, 21287, United States

  • Mayo Clinic

    Rochester, Minnesota, 55905, United States

  • St. Antonius Hospital

    Nieuwegein, 3435, Netherlands

  • St. Michael's Hospital

    Toronto, Ontario, M5B 1W8, Canada

  • St. Paul's Hospital, University of British Columbia

    Vancouver, British Columbia, V6Z 1Y6, Canada

  • UCHealth Pulmonary Vascular Disease Clinic - Anschutz Medical

    Aurora, Colorado, 80045, United States

  • University of Alberta

    Edmonton, Alberta, T6G 2B7, Canada

  • University of Arkansas for Medical Sciences

    Little Rock, Arkansas, 72205, United States

  • University of California, San Francisco

    San Francisco, California, 94110, United States

  • University of North Carolina at Chapel Hill

    Chapel Hill, NC, North Carolina, 27599, United States

  • University of Utah

    Salt Lake City, Utah, 84132, United States

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States

  • Yale University

    New Haven, Connecticut, 06520-8042, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.