CHORUS: Comprehensive HHT (Hereditary Hemorrhagic Telangiectasia) Outcomes Registry of the United States

Status: Recruiting
Location: See all (16) locations...
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:

• Diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing.

• Able to provide informed consent or informed consent via a parent or legally authorized representative due to their age or medical condition.

Locations
United States
Alabama
University of Alabama at Birmingham
RECRUITING
Birmingham
California
University of California, Los Angeles
RECRUITING
Los Angeles
University of California, San Francisco
RECRUITING
San Francisco
Colorado
University of Colorado, Denver
RECRUITING
Aurora
Connecticut
Yale University
RECRUITING
New Haven
Georgia
Augusta University
RECRUITING
Augusta
Massachusetts
Massachusetts General Hospital
RECRUITING
Boston
Minnesota
Mayo Clinic
RECRUITING
Rochester
Missouri
Washington University School of Medicine
RECRUITING
St Louis
North Carolina
University of North Carolina, Chapel Hill
RECRUITING
Chapel Hill
New York
Columbia University
RECRUITING
New York
Ohio
The Cleveland Clinic
RECRUITING
Cleveland
Oregon
Oregon Health and Science University
RECRUITING
Portland
Pennsylvania
University of Pennsylvania
RECRUITING
Philadelphia
Texas
University of Texas Southwestern
RECRUITING
Dallas
Utah
University of Utah
RECRUITING
Salt Lake City
Contact Information
Primary
Melissa A Dickey, MSN
melissa.dickey@curehht.org
410-357-9932
Backup
Nolie Krock, MSc
nolie.krock@curehht.org
410-357-9932
Time Frame
Start Date: 2023-11-13
Estimated Completion Date: 2033-11
Participants
Target number of participants: 10000
Treatments
HHT patients
Those diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing
Sponsors
Collaborators: Mayo Clinic, Washington University School of Medicine, University of Texas, Massachusetts General Hospital, The Cleveland Clinic, Oregon Health and Science University, University of Pennsylvania, Yale University, Columbia University, University of Utah, University of Alabama at Birmingham, Health Resources and Services Administration (HRSA), Augusta University, University of Colorado, Denver, University of California, Los Angeles, University of California, San Francisco, University of North Carolina, Chapel Hill
Leads: Cure HHT

This content was sourced from clinicaltrials.gov