Condition: Hereditary Hemorrhagic Telangiectasia · Arteriovenous Malformations · Telangiectasia · Sponsor: Cure HHT
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. Another important goal of the study is to provide a way to contact people to participate in future clinical trials and other research. The registry will be a centralized resource for recruitment for clinical trials. People in the registry will not be obligated to join any of these additional studies, but if interested, can agree to be contacted if they may be eligible for a study. Participants will: * Be asked to provide permission to collect information from their medical records, including things like demographic information, diagnosis information, family history, test results, treatment information, symptoms, complications, lifestyle and other relevant medical information. * Be asked study-related questions by phone or at a clinic visit. * Be asked study-related questions every year after enrollment for up to 10 years or until the study ends. A member of the study team will communicate with participants by phone or…
This description comes directly from the study's public registry record.
Nolie E Krock, MSc · 410-357-9932 · nolie.krock@curehht.org
Cassi Friday, PhD · 410-357-9932 · cassi.friday@curehht.org
Always discuss trial participation with your own doctor first.
| 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 |
| Massachusetts General Hospital | Boston, Massachusetts, United States | Recruiting |
| Mayo Clinic | Rochester, Minnesota, United States | Recruiting |
| Washington University School of Medicine | St Louis, Missouri, United States | Recruiting |
| Columbia University | New York, New York, United States | Recruiting |
| University of North Carolina, Chapel Hill | Chapel Hill, North Carolina, United States | Recruiting |
| The Cleveland Clinic | Cleveland, Ohio, United States | Recruiting |
+ 4 more locations — full list on the registry record.
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This page is independently generated by Eichor from the public ClinicalTrials.gov record and re-synced daily. It is not the sponsor's official website unless claimed. Nothing here is medical advice; eligibility is always determined by the study team — talk to your own doctor first.
Source record: clinicaltrials.gov/study/NCT06259292