New registry aims to unlock secrets of rare bleeding disorder

NCT ID NCT04150822

First seen Jun 27, 2026 ยท Last updated Jun 27, 2026

Summary

This study is creating a registry of people with Hereditary Hemorrhagic Telangiectasia (HHT), a rare condition that causes abnormal blood vessels and frequent nosebleeds. Researchers will collect health information from about 1,000 adults over many years to see how the disease changes and what factors affect it. The goal is to better understand HHT and improve future treatments.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary โ€” we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

arteriovenous hemangioma/malformation arteriovenous malformations of the brain hereditary hemorrhagic telangiectasia telangiectasia, hereditary hemorrhagic, type 1

As listed by the trial registrant

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

Contacts and locations

Locations

  • St. Michael's Hospital

    Toronto, Ontario, M5B1W8, Canada