Registry for Hereditary Hemorrhagic Telangiectasia
(CHORUS Trial)
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to learn more about Hereditary Hemorrhagic Telangiectasia (HHT), a disorder that causes abnormal blood vessels and frequent nosebleeds. Researchers will gather information over time to understand how HHT affects individuals and identify factors that might alter the disease's progression. The goal is to improve future treatments for HHT. Anyone diagnosed with HHT, either through symptoms or genetic testing, and who can give consent, is eligible for this study. Participants will share their medical history and answer questions about their health annually. As an unphased study, this trial offers a unique opportunity to contribute to foundational research that could lead to a better understanding and treatment of HHT.
Why are researchers excited about this trial?
Researchers are excited about the Comprehensive HHT Outcomes Registry of the United States (CHORUS) because it aims to gather extensive data on Hereditary Hemorrhagic Telangiectasia (HHT), a condition often treated with a combination of medications, laser therapy, and, in severe cases, surgery. Unlike focusing on a single treatment, this registry allows for a comprehensive understanding of how different treatments and management strategies impact HHT over time. By collecting and analyzing data from a wide range of patients, CHORUS could lead to more personalized and effective treatment plans, filling knowledge gaps and potentially highlighting new therapeutic approaches. This holistic approach to studying HHT outcomes is what sets this initiative apart from traditional treatment studies.
Who Is on the Research Team?
Melissa A Dickey, MSN
Principal Investigator
Cure HHT
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Baseline Data Collection
Comprehensive baseline clinical, demographic, and lifestyle data are collected using the HHT Baseline Assessment Scale
Longitudinal Data Collection
Prospective and retrospective data collection to assess clinical outcomes and disease progression using various assessment tools
Follow-up
Participants are monitored for changes in health, new test results, treatment information, symptoms, and complications from HHT
What Are the Treatments Tested in This Trial?
Find a Clinic Near You
Who Is Running the Clinical Trial?
Cure HHT
Lead Sponsor
Children's Hospital of Philadelphia
Collaborator
University of Alabama at Birmingham
Collaborator
University of California, San Francisco
Collaborator
Mayo Clinic
Collaborator
University of California, Los Angeles
Collaborator
The Cleveland Clinic
Collaborator
University of Pennsylvania
Collaborator
Washington University School of Medicine
Collaborator
University of North Carolina, Chapel Hill
Collaborator
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