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

NCT04150822 · Status: ACTIVE_NOT_RECRUITING · Type: OBSERVATIONAL · Enrollment: 296

Last updated 2026-04-22

No results posted yet for this study

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.

Conditions

  • Hereditary Hemorrhagic Telangiectasia
  • HHT
  • Arteriovenous Malformation of Brain

Interventions

OTHER

Registry and Saliva sample

Non-interventional registry with saliva sample collected for DNA analysis

Sponsors & Collaborators

  • Cure HHT

    collaborator OTHER

  • Dartmouth College

    collaborator OTHER

  • Unity Health Toronto

    lead OTHER

Principal Investigators

  • Marie E Faughnan, MD · Unity Health Toronto

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2018-11-01
Primary Completion
2023-06-23
Completion
2028-06-30

Countries

  • Canada

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04150822 on ClinicalTrials.gov