Track this trial free. DataLookout checks ClinicalTrials.gov daily and emails you which fields changed on NCT06259292 (status, enrollment, completion dates, endpoints, sites) when this record is updated. Free accounts track up to 5 trials.

Track this trial

Comprehensive HHT Outcomes Registry of the United States (CHORUS)

Study acronym: CHORUS
StatusRecruiting
PhaseNot specified
SponsorCure HHT
Started
View on ClinicalTrials.gov ↗

Record History

See every version on ClinicalTrials.gov ↗

  1. Site contacts updated at 6 of 16 sitesv12
  2. Site contacts updated at 4 of 16 sitesv11
  3. Study sites: 15 to 16
    • Collaborators revised (17)
    v10
  4. Site contacts updated at 15 of 15 sitesv9
  5. Site contacts updated at 3 of 15 sitesv8
Show 6 earlier versionsHide 6 earlier versions
  1. Site contacts updated at 1 of 15 sitesv7
  2. Site details revised at 1 of 15 sitesv6
  3. Study sites: 14 to 15v5
  4. Site details revised at 2 of 14 sitesv4
  5. Study sites: 11 to 14
    • Collaborators: 16 to 17
    v3
  6. Study sites: 10 to 11v2
  1. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
Cure HHT
2 trials monitored
See all monitored trials
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 at clinic visits to collect information regarding any changes to their health over the previous year/s including new test results, treatment information, symptoms, and complications from HHT.
Trial Details
NCT Number NCT06259292
Lead Sponsor Cure HHT
Collaborators: Augusta University, The Cleveland Clinic, Mayo Clinic, Massachusetts General Hospital, Columbia University, 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, University of Texas, University of Utah, Washington University School of Medicine, Yale University, Health Resources and Services Administration (HRSA), University of Alabama at Birmingham
Conditions
(from sponsor)		 Hereditary Hemorrhagic Telangiectasia, Arteriovenous Malformations, Telangiectasia, Epistaxis, GastroIntestinal Bleeding, Cerebral Arteriovenous Malformations, Vascular Malformation
Related terms Arteriovenous Malformations, Epistaxis, Gastrointestinal Hemorrhage, Intracranial Arteriovenous Malformations, Telangiectasia, Hereditary Hemorrhagic, Telangiectasis, Vascular Malformations
Enrollment 10,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov