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, allowing us to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease.

Many HHT Centers of Excellences in various regions of the U.S. are now recruiting patients to participate in this study. Learn more about this study and locate a recruiting center by reading the Comprehensive Protocol Sheet.

Patients in the U.S. that have been diagnosed with HHT are eligible to participate. Participants will be required to establish care at an HHT Center of Excellence actively recruiting HHT patients. No additional travel is required. Only information will be gathered, which will take approximately two hours of your time for the enrollment visit or call and one hour of your time each year following enrollment.

Participating Sites

  • Augusta University
  • The Cleveland Clinic
  • Mayo Clinic
  • Massachusetts General Hospital
  • New York Presbyterian / Columbia University Irving Medical Center
  • Oregon Health and Science University
  • University of California, Los Angeles
  • University of California, San Francisco
  • University of Colorado, Denver
  • University of North Carolina, Chapel Hill
  • University of Pennsylvania / Children’s Hospital of Philadelphia
  • University of Texas Southwestern
  • University of Utah
  • Washington University School of Medicine
  • Yale University

Read the CHORUS protocol sheet

If you or a family member are interested in learning more, you can call the Cure HHT office at 410-357-9932 or email chorus@curehht.org. Cure HHT will assist with connecting you to HHT Centers of Excellence actively recruiting HHT patients to participate in this study.

The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is fully supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $5,862,638 with 0 percentage financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.