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 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.
Hereditary Hemorrhagic Telangiectasia
Arteriovenous Malformations
Telangiectasia
Epistaxis
GastroIntestinal Bleeding
Cerebral Arteriovenous Malformations
Vascular Malformation
The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is a research initiative led by the HHT Foundation International, Inc. ("Cure HHT"). The study focuses on Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic disorder characterized by the development of abnormal blood vessels in various organs of the body, including the brain, spine, lungs, liver, GI tract, skin, nasal mucosa, and oral cavity. The prevalence of HHT is estimated to be 1 in 5000, affecting children and adults. These abnormal blood vessels can lead to acute and chronic bleeding, stroke, heart failure, and death. Treatments are currently predominately limited to managing complications, while approximately 90% of adults have ongoing symptoms, despite the best surgical and medical therapies. With recent drug developments related to angiogenesis, there is hope for effective novel therapies. A natural history registry for HHT has significant implications for improving the understanding and management of this rare genetic disorder. The purpose of this study is to better understand HHT, the symptoms and complications it causes ("outcomes"), and to understand how the disease impacts people's lives. The investigators hypothesize that a natural history registry for HHT will improve our understanding of the disease, lead to better management of patients, and ultimately, contribute to developing novel therapies to treat this disease. The investigators will collaborate with multiple HHT Centers of Excellence across the U.S. to establish a comprehensive registry of HHT patients. The study aims to enroll approximately 10,000 HHT patients over a 10-year period. Longitudinal data will be collected both retrospectively and prospectively, with a focus on increasing the understanding of this rare disease, accelerating the development of new diagnostic and treatment options, and working collaboratively with clinicians who care for individuals with HHT to identify and address gaps in the system of care, especially those from underserved populations. The study aims to serve as a centralized resource for future clinical trials and research in HHT. Data security and confidentiality are prioritized, and participants have the option to withdraw from the study at any time. The study is funded by the U.S. Department of Health Resources and Service Administration (HRSA) through a grant awarded to Cure HHT.
| Study Type : | OBSERVATIONAL |
| Estimated Enrollment : | 10000 participants |
| Official Title : | CHORUS: Comprehensive HHT (Hereditary Hemorrhagic Telangiectasia) Outcomes Registry of the United States |
| Actual Study Start Date : | 2023-11-13 |
| Estimated Primary Completion Date : | 2033-11 |
| Estimated Study Completion Date : | 2033-11 |
Information not available for Arms and Intervention/treatment
| Ages Eligible for Study: | |
| Sexes Eligible for Study: | ALL |
| Accepts Healthy Volunteers: | 1 |
Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.
RECRUITING
University of Alabama at Birmingham
Birmingham, Albama, United States, 35294
RECRUITING
University of California, Los Angeles
Los Angeles, California, United States, 90095
RECRUITING
University of California, San Francisco
San Francisco, California, United States, 94107
RECRUITING
University of Colorado, Denver
Aurora, Colorado, United States, 80045
RECRUITING
Yale University
New Haven, Connecticut, United States, 06520
RECRUITING
Augusta University
Augusta, Georgia, United States, 30912
RECRUITING
Massachusetts General Hospital
Boston, Massachusetts, United States, 02114
RECRUITING
Mayo Clinic
Rochester, Minnesota, United States, 55905
RECRUITING
Washington University School of Medicine
Saint Louis, Missouri, United States, 63110
RECRUITING
Columbia University
New York, New York, United States, 10032
RECRUITING
University of North Carolina, Chapel Hill
Chapel Hill, North Carolina, United States, 27599
RECRUITING
The Cleveland Clinic
Cleveland, Ohio, United States, 44106
RECRUITING
Oregon Health and Science University
Portland, Oregon, United States, 97239
RECRUITING
University of Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
RECRUITING
University of Texas Southwestern
Dallas, Texas, United States, 75390
RECRUITING
University of Utah
Salt Lake City, Utah, United States, 84132