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Treatment for Osler-Weber-Rendu Syndrome (CHORUS Trial)

N/A
Recruiting
Led By Melissa A Dickey, MSN
Research Sponsored by Cure HHT
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Timeline
Screening 3 weeks
Treatment Varies
Follow Up 10 years
Awards & highlights

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.

Eligible Conditions
  • Osler-Weber-Rendu Syndrome
  • Spider Veins
  • Nosebleed
  • Vascular Malformations
  • Arteriovenous Malformations
  • Cerebral Arteriovenous Malformations
  • Gastrointestinal Bleeding

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~10 years
This trial's timeline: 3 weeks for screening, Varies for treatment, and 10 years for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.
Primary study objectives
Comprehensive Baseline Data Collection using HHT Baseline Assessment Scale
Prospective Longitudinal Clinical Outcomes Assessment using HHT Clinical Outcomes Scale
Secondary study objectives
Epistaxis Characterization with Epistaxis Severity Scale
Identify severe morbidity and mortality outcomes related to HHT using HHT Clinical Outcomes Scale
Organ Vascular Malformation (VM) Development and Growth Assessment using Organ VMs Assessment Tool
+1 more

Find a Location

Who is running the clinical trial?

Children's Hospital of PhiladelphiaOTHER
721 Previous Clinical Trials
8,594,327 Total Patients Enrolled
University of California, San FranciscoOTHER
2,551 Previous Clinical Trials
15,247,886 Total Patients Enrolled
Mayo ClinicOTHER
3,298 Previous Clinical Trials
3,948,445 Total Patients Enrolled
~6667 spots leftby Nov 2033