NCT06259292 Comprehensive HHT Outcomes Registry of the United States (CHORUS)
| NCT ID | NCT06259292 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Cure HHT |
| Condition | Hereditary Hemorrhagic Telangiectasia |
| Study Type | OBSERVATIONAL |
| Enrollment | 10,000 participants |
| Start Date | 2023-11-13 |
| Primary Completion | 2033-11 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 10,000 participants in total. It began in 2023-11-13 with a primary completion date of 2033-11.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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 Criteria
Inclusion Criteria: * 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. Exclusion Criteria: * Unable to provide informed consent or informed consent via a parent or legally authorized representative.
Contact & Investigator
Nolie Krock, MSc
PRINCIPAL INVESTIGATOR
Cure HHT
Frequently Asked Questions
Who can join the NCT06259292 clinical trial?
This trial is open to participants of all sexes, studying Hereditary Hemorrhagic Telangiectasia. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06259292 currently recruiting?
Yes, NCT06259292 is actively recruiting participants. Contact the research team at nolie.krock@curehht.org for enrollment information.
Where is the NCT06259292 trial being conducted?
This trial is being conducted at Birmingham, United States, Los Angeles, United States, San Francisco, United States, Aurora, United States and 11 additional locations.
Who is sponsoring the NCT06259292 clinical trial?
NCT06259292 is sponsored by Cure HHT. The principal investigator is Nolie Krock, MSc at Cure HHT. The trial plans to enroll 10,000 participants.