Comprehensive HHT Outcomes Registry of the United States (CHORUS)

Recruiting Observational Study
Hereditary Hemorrhagic Telangiectasia Arteriovenous Malformations Telangiectasia Epistaxis GastroIntestinal Bleeding Cerebral Arteriovenous Malformations Vascular Malformation
No Placebo Group Every participant receives an active treatment — no one gets a placebo. Healthy Volunteers Welcome You do not need to have the condition being studied to take part. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
10,000 (estimated)
Sponsor
Cure HHT · Other
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About This Trial
The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is an observational registry of patients diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT). The purpose of this study is to better understand HHT, the symptoms and complications it causes, and the impact the disease has on people's lives. The investigators will collect long-term information about the participant, allowi…
Trial Locations
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Eligibility Criteria
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 co…
Contacts

Nolie E Krock, MSc

410-357-9932

nolie.krock@curehht.org

CONTACT

Cassi Friday, PhD

410-357-9932

cassi.friday@curehht.org

CONTACT