Registry for patients with Hereditary Hemorrhagic Telangiectasia

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is an observational registry aimed at understanding Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic disorder that causes abnormal blood vessel formation. This initiative collects long-term data on patients to track the disease's progression, symptoms, and complications, ultimately aiming to enhance treatment strategies. The registry will also serve as a resource for recruiting participants for future clinical trials related to HHT. By gathering comprehensive information, the study seeks to improve patient management and contribute to the development of novel therapies.

Why it matters

Who can join: the full rules

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.

Where it's running

• University of Alabama at Birmingham
  Birmingham, Alabama, United States Recruiting
• University of California, Los Angeles
  Los Angeles, California, United States Recruiting
• University of California, San Francisco
  San Francisco, California, United States Recruiting
• University of Colorado, Denver
  Aurora, Colorado, United States Recruiting
• Yale University
  New Haven, Connecticut, United States Recruiting
• Augusta University
  Augusta, Georgia, United States Recruiting

Study contacts

• Principal investigator: Nolie Krock, MSc — Cure HHT
• Study coordinator: Nolie E Krock, MSc
• Email: nolie.krock@curehht.org
• Phone: 410-357-9932

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• DIAG723 in Adults With HHT

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.