Active — Not RecruitingNot Applicable

CHORUS - Comprehensive HHT Outcomes Registry of the United States (Formerly OUR HHT Registry)

Canada296 participantsStarted 2018-11-01

Plain-language summary

The goal of this study is to better understand HHT, the symptoms and complications it causes ("outcomes") and how the disease impacts people's lives. The investigators are aiming to recruit and gather information together in the Registry from 1,000 HHT patients from four HHT Centres of Excellence in North America. The Investigators will collect long-term information about the people in the Registry, allowing the investigators to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease.

Who can participate

Age range18 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Participants diagnosed with HHT by the Curacao criteria (either 3+ clinical diagnostic criteria or genetic diagnosis). * Capable of giving informed consent in person or via a substitute decision maker * \>18 years Exclusion Criteria: * Participants unable to give informed consent either in person or with a substitute decision maker

What they're measuring

Prospective and longitudinal characterization of major outcomes of HHT in a cohort of HHT patients, from Centers of Excellence in North America.

Timeframe: 10 Years

The longitudinal characterization of major outcomes of HHT in the North American cohort

Timeframe: 10 Years

Trial details

NCT IDNCT04150822

SponsorUnity Health Toronto

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2023-06-23

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